In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Ben Lindon was diagnosed with an inoperable aggressive oligodendroglioma brain tumour on March 11, 2008, a week before his 29th birthday. He underwent radiotherapy treatment and 120 cycles of chemotherapy – thought to be a record for a UK patient. Amazingly, having been told that all his treatment would render him infertile, he went on to father two miracle children, Martha and Sid.
Read Ben’s story…
In March 2008, I was out running, as part of my training to join Warwickshire Fire Service as a retained fire-fighter, when my left arm went numb. I was about five miles from my home in Shipston-on-Stour. The next thing I remember is being picked up from under a car by two men, the rest is history.
I was rushed to Warwick Hospital and kept overnight where I was told I had suffered a seizure, probably due to low blood sugar.
After many tests something more serious was discovered and I was transferred to Coventry University Hospital where the news was broken that I had a brain tumour.
“Several MRI scans and a biopsy later, I was given worse news: the tumour was inoperable, marking the start of life-changing treatment and medication, which I was told would continue for the rest of my life.”
My brain tumour was too risky to surgically remove because it was so close to my cerebral cortex, which controls motor functions such as movement and speech. Surgery would put me at risk of dying in the operating room or suffering a severe stroke and paralysis.
One week later, on my 29th birthday, I began radiotherapy treatment along with chemotherapy, which I continued to take until 2018 when I had reached 120 cycles – thought to be the most chemotherapy given to any patient in the UK. It only stopped because the doctors decided that it was no longer making any difference to the tumour and it had halved in size thanks to all the treatment.
I have to take anti-seizure drugs to help me with the fits I suffer as a result of the proximity of the tumour to my primary motor cortex.
“I was also told that, as a result of my treatment, it was very unlikely I could have children naturally. However, I managed to prove the doctors wrong and went on to father two miracle children.”
Martha Rose was born in September 2012 and Sidney was born in June 2014. We thought Martha was miraculous enough and having Sid was another miracle. It’s the family dream to have a little boy and girl, things we didn’t really believe we would have. It was beyond our wildest dreams!
I had very quickly decided that the best way to get through the experience of being diagnosed with a brain tumour and get better, both physically and mentally, would be to lead a much healthier lifestyle and to try and focus on others who are worse off than me.
“I began running and doing different kinds of training to get myself into better physical shape – and this helped my mental health a great deal too. Also, because I had my first, terrible fit while running I thought it was a good way to bring my experience full circle and face my fears.”
I ran and trained for the next few years until, in April 2011, I was fit enough to compete in the Brighton Marathon, clocking up a respectable time of four-and-a-half hours.
In September 2013, I took on The Three Peaks challenge for Brain Tumour Research (climbing the highest peaks in Scotland, England and Wales, one after the other within a 24-hour period) and raised around £3,000 which is enough to fund a day of research at a Centre of Excellence. I pledged to complete at least one major challenge a year to help raise money for research into brain tumours.
In April, 2014 I ran the London Marathon, proudly displaying my Brain Tumour Research pink running vest.
In August 2015, I was out with the children pushing Sid in the pram when my dad noticed I was a bit confused. He took me into the local A&E department. I started having seizures over the next week, some of which were very long.
“A seizure which lasted 35 minutes, starved my brain of oxygen and brought on a stroke. It left me unable to speak, walk or even eat. I was in hospital for 10 weeks including time spent undergoing rehabilitation at Evesham Community Hospital to regain my speech and particularly my mobility.”
I started running in the car park, even though I was told not to, so the nurses decided it was safer to run with me.
I also revealed that I wanted to get back on my bicycle but was told to wait at least until after the new year as I would need specialised physiotherapy to get my balance back. Instead of doing this, I was so keen to get on with my life and my fundraising that I organised a big bike ride for later in the year.
Through sheer determination, I battled my way back to “full” fitness with the help of intense physio and a personal trainer in order to prepare myself for the next big challenge.
The Mirror newspaper ran a piece on me whilst on my 89th cycle of chemo in which I spoke about ‘the indescribable fatigue and tiredness, like a lethargy which just completely saps me of all of my energy’.
In September 2016 I set off from John O’Groats with a team which included my close friend Dr David Williams, who was also my GP when I lived in Shipston and was first diagnosed with a brain tumour. We cycled the 1,000 miles to Land’s End in nine days.
In August 2017, coinciding with my 100th cycle of chemotherapy, I kayaked 100 miles along the River Wye raising more than £6,000. I had two lucky charms with me during the four days it took to complete the challenge – a LEGO man which belongs to Sid, then three and five-year-old Martha’s panda, known as Sue (from the Sooty and Sweep show).
After completing the 100 miles kayak, I started thinking about what the next big challenge could be and started talking to specialists to find out if it would be safe for me travel to Mount Everest in Nepal and at the very least climb to its base camp which is at an altitude of 5,364 metres (nearly 17,600ft).
In 2018, I suffered another deterioration in my condition and had a number of falls which meant I was forced to rely on a wheelchair and mobility scooter to get around and led me to move into sheltered housing in Ledbury.
As part of my commitment to be an activist and ambassador for the charity, I was proud to share my experience and the impact of my brain tumour in a report entitled Brain tumours – a cost too much to bear? published in November 2018 and presented by Brain Tumour Research to the All-Party Parliamentary Group on brain tumours (APPG-BT).
Writing in the manifesto, I said: “The impact of having a brain tumour has been enormous and has cost me tens of thousands in lost income over the 10 years since my diagnosis, aged 29.
“I went from having an exciting career as a journalist, to having to retrain as a self-employed tree surgeon because no one wants to employ someone with a brain tumour. I then had to pack in that job as my seizures made me unfit to work. After that I worked part-time in HMV and then relied on benefits. Of course, living on benefits doesn’t bring in anything like the same money as I earned as a tree surgeon.
“It has been a huge struggle to provide for my family and I have had to totally give up my plans of buying a house.
“I have had more than 120 cycles of chemotherapy and continue to care for my two ‘miracle children’ who were born after I was told my chemotherapy treatment would make me infertile. However, I now have to rely on another member of the family being with me or pay to have additional support.
“My condition has deteriorated further lately and I haven’t been able to work at all for more than a year, being currently reliant on a wheelchair and a mobility scooter to get around. For some months, I have been waiting for a bed in a specialist hospital to give me neurological physiotherapy as part of my rehabilitation. In the meantime, because I was unable to access my home, I am having to live in sheltered housing alongside old-age pensioners as I couldn’t find any suitable housing provision locally for people of my age who have disabilities. It can get quite lonely as I have had to move away from my home town and don’t get to see my children or my friends as often as I would like.”
I turned 40 in March 2019, but was unable to celebrate then as, after months of waiting, I was finally admitted to Frenchay Brain Injury Rehabilitation Centre in Bristol where I was hopeful I would make rapid progress. I had six weeks of rehab which got me back on my feet but then ended up having a huge seizure and having to be transferred to Southmead Hospital with a serious lung and chest infection.
“I was in a very serious state and was told that out of 80 people in the hospital I was the one the doctors were most concerned about.”
The intensive care consultant told my family that I was very poorly and we may have to consider at what point further treatment be withdrawn. My family never lost hope and against the odds I pulled through.
I returned to Frenchay to begin rehab again, and was again doing well when I had another big seizure. I think the doctors were concerned I was pushing myself too far in my efforts to regain mobility. I was discharged, feeling that I came out actually not much better than when I went in. Even more frustratingly, I went home without any plans for what was to happen to me in the community and didn’t have any physiotherapy for quite a few months. It was a huge blow to literally have nothing put in place.
Meanwhile, I was very grateful to Kate, from whom I am separated, for signing up to run the London Marathon in 2019. Thankfully we remain very good friends so I have no problem getting to see Martha and Sid, as long as someone can drive them over to me. Kate took on the challenge for Team Ben and Brain Tumour Research, despite the fact she is not a runner, because she knew how important the charity is to me and how much I was missing being able to take on fundraising challenges of my own.
Credit: Venture Studios
It wasn’t until September 2019 I really got to celebrate being 40 and enjoyed a lovely party with lots of friends and family.
I am on 12 or 15 different medications, some of which make me very drowsy, so I tend to sleep a lot. I am keen to regain my mobility and although I only have one physio session a week it is incredibly intense and I am now walking round my house. I also do yoga to help with my balance and breathing. I hope to regain total mobility as soon as possible.
A scan at the end of January 2020 has shown that the tumour is still stable and all the fluid which was around my tumour when I was in Southmead has gone. Since I completed all my chemotherapy treatment, the tumour is no longer aggressive either.
“My biggest inspiration throughout my brain tumour journey has been my children. What more inspiration do you need really than two healthy kids who are growing up so wonderfully when you were told you couldn’t father children?”
I continue to use what was a very difficult and life-threatening experience for me to raise awareness and funding for research into brain tumours. If I can boost people's understanding of what is a very little-known-about disease, not to mention a terrifyingly complex issue, then my experiences will not be wasted and maybe other people suffering will see that all is not lost.
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