Richard’s Story

“Everything began when I started getting severe headaches. I felt like I was being hit in the back of my head with a baseball bat. But it was when I collapsed at work one day in 2021 that the severity of this pain started to become clear. Several hours of CT scans and tests revealed that I had a mass on my brain and would need to be moved to a more specialist hospital in Coventry for more tests.  After five scans over the next few days, including an MRI and a biopsy, I was finally allowed home on Christmas Eve.

I spent Christmas that year still unsure of what was happening. Then, on New Year’s Eve, which also just happens to be my birthday, I received a call to tell me I had a GBM 4 terminal brain tumour with 12 to 20 months remaining.”

In early January, Richard was put on an intense course of radiotherapy. “I had 6 weeks of radiotherapy going every day for 5 days a week. It was an intense form of radiotherapy which means I can never have this kind of treatment again. Following that, I had 22 rounds of chemotherapy in tablet form, 1 week of tablets, with 3 weeks off. On top of all that, I also had to take steroids for the first year of chemo which was awful. I gained weight, could barely walk or get around and I was so tired, I just didn’t recognise myself.”

Learning to live a new way of life

As he tried to embrace his new way of life, Richard decided it was time to get away so over the course of the following year booked trips abroad including a trip to Cyprus, Lanzarote and Dubai which he went to with wife Lucy in March 2023. “I wanted to get away with my wife. After the initial diagnosis, I didn’t think I would still be here, so I wanted us to take some trips. Whilst in Dubai, we went out one night and I was looking at Lucy and just said I didn’t feel right, and then I collapsed. I didn’t know anything about it. We’d only just arrived at the bar, and I started to feel dizzy, next thing I woke up in a Dubai Hospital. They told me I’d had a tonic-clonic seizure which lasted 35 – 40 minutes, had a bleed on the brain and was now left with epilepsy. In the early stages I was constantly having fits, but they have improved over time, and I can now recognise the triggers and when a seizure might be about to happen.”

After being initially told he would be on chemo for the remainder of his life, after 22 rounds, Richard was told it was to stop. “When I was told no more chemo I initially panicked. After being told I would be on it for the rest of my life, I didn’t know what was going to happen. But having also been weened off the steroids, I’m now a much happier person and feel virtually back to normal! There are obviously things such as the loss of my peripheral vision, memory problems, epilepsy and around 30 tablets to take per day, but I feel much more like me and am trying to stay positive and enjoy what I have.”

Staying positive thanks to family and friends

One of the things helping Richard to keep so positive, is a strong network of friends and family around him. “If it wasn’t for my wife Lucy, I wouldn’t be here. We have a very close relationship; she is an angel. And I have a close group around me who will always ask how I’m doing. Sometimes they’ll say, ‘Why you’ and my reply is always the same, because I’m taking one for the team so none of them get it.”

Having passed his initial diagnosis, Richard wanted to share this with his friends and family, so he threw a very big party to celebrate. “I’m one of a small percentage of people who have made it past 18 months. This Christmas I will be part of the 5% of people who survive for 3 years, so am planning another big party for my friends and family. My next aim for that is 5 years when I’ll be in the 1% club! I try not to think about it, but every now and again I’m reminded that everything could change in an incredibly short space of time. I have scans every three months to check for changes, so usually it’s when I’m waiting for the results that I think about it.”

Finding support at KEMP Hospice

In Summer 2024 Richard was referred to KEMP Day Hospice. “Initially the team from KEMP came round to see me at home, they saw me and my environment, what I needed help with, and they advised me to come into the Hospice. Now I come every Wednesday and really look forward to it, it’s a great group. Walking through that door is like shutting everything else off, leaving everything behind you. None of us talk about our illnesses. We’re all in the same boat but we just have a good chat about whatever.”

Thanks to the variety of free of charge services KEMP provides, Richard can access not only Day Hospice activities including Reiki and massage, but also the therapy available from the bereavement support team. “I really do love it here; it helps so much, and I’m so pleased I can access such a variety of services while I’m here. I’ve tried to show my support for KEMP by taking part in fundraising events like the Canal Walk in 2023. I obviously can’t take part in everything, certainly won’t be jumping out of a plane or doing the Santa Fun Run, but will do whatever I can to support the charity, in the way they have supported me.”

When we asked Richard, how does he remain so positive, he simply said “I don’t know. I don’t know why I’ve been so positive, why I’m not scared of the future, but then, nobody really knows what their future holds. I know one day things will change, but the way I see it, you can either fight, or it’s got you.”