Father Ben Lindon to have 100th round of chemotherapy for brain tumour

Ben Lindon is about to undergo his 100th round of chemotherapy as part of a long fight with brain cancer. He tells us his story:

All my life I wanted to be famous.

I wanted to be a rock star.

Now I could be famous – but for being the youngest person in the UK thought to have received this amount of chemotherapy.

So far I’ve had 99 cycles in nine years – soon to be 100.

I was a 29-year-old journalist when I was diagnosed with an aggressive brain tumour in March 2008.

I was out running when I had a seizure and collapsed in the street.

At the hospital, doctors noticed I had a shadow on my brain and after being referred, I was told I had a grade two glioblastoma brain tumour.

I was completely gutted. It’s an old cliche, but the rug was pulled out from under my feet. I felt I had been given a death sentence. I didn’t deal with it well, I wasn’t stoic. The more and more information they gave me, the less and less it made sense.

The tumour is just two millimetres in size. But the oncology specialists decided it was too close to my cerebral cortex to operate on, and removing it carried a high chance of death.

Instead they decided to "manage" the tumour with chemotherapy.

The treatment comes in tablet form, every four weeks.

I just wake up in the morning and neck them. You are supposed to take them after you’ve eaten, but I just think to myself, I’ll feel ill for a while and then I’ll get better.

The results are erratic. Often I’m fine, sometimes I suffer overwhelming fatigue and sickness. This latest one – the 99th – has affected me more than any of the other cycles in recent months.

Despite the survival rate for my kind of cancer being five years, I’m still here, nine years after diagnosis.

I’m lucky.

But others may not be as lucky.

The amount of funding for research into brain tumours amounts to one percent of the funding for "big cancers" such as breast and prostate cancer.

We need to change this, particularly as those that suffer the worst from this disease are the most vulnerable: the old and the very young. In simple terms they don’t stand a very good chance of survival because so little is known about this disease.

Research requires money and it’s now one of my jobs to get that money. That is why I’m taking on this mission for Brain Tumour Research.

When I kayak 100 miles down the River Wye and into the ocean at Chepstow next month, I will have completed my 100th cycle of chemotherapy.

But there is also a selfish reason as to why I am doing this challenge. I was told I couldn’t have children due to the aggressive radiotherapy and a lifetime of chemotherapy.

But I’m blessed and I have a beautiful four-year-old daughter Martha Rose and a three-year-old mischievous son, Sidney George. I’d like to show them that ordinary people like me can overcome anything, and see beautiful places, if we fight.

I’d like to show them that, despite being technically ill, you can do anything.

If you can leave a legacy, this is mine and I think it’s worth days of kayaking and, potentially, tackling "trenchfoot of the bum".

I’m finishing this. Two years after a fortnight of seizures which induced a stroke, and even longer since since my physiotherapists told me: "Stop doing dangerous things".

But I’ve pledged to raise money for Brain Tumour Research by doing something more challenging each year until I’m broken.

I’ve run marathons, cycled the country and climbed mountains to raise money.

And I will continue to do so until I can’t.

(c) Sky News 2017: Father Ben Lindon to have 100th round of chemotherapy for brain tumour