Brian’s story

The community team visit Brian regularly- bringing all the care and support of the hospice into his own home. Find out more about Brian's journey living with a life-limiting illness.

Image of Brian, being cared for by hospice at home

“I was diagnosed five years ago”

My wife, Sylvie, and I moved to Ferring in late 2016, having enjoyed 12 sunny years living in the Dordogne in South-West France. Soon after we arrived back in the UK, I was finding myself breathless when walking any incline. I thought it was a heart problem at first as I’d had a triple bypass 24 years before, but doctors discovered I had condition called Combined Pulmonary Fibrosis and Emphysema Syndrome – or CPFE for short – which causes scarring of the lungs and makes breathing increasingly difficult.

Of course, with any lung problem people are quick to ask if you ever smoked. Whilst I hadn’t smoked for over 35 years, I had worked as a marine engineer for much of my younger life, before the days of proper safety equipment when there were all sorts of pollutants and chemicals in the work environment. Sadly I have heard that eight of my seagoing colleagues have, or have died from asbestosis. So whether this has something to do with it I’m not sure.

 “Suddenly my condition jumped from stage 1 to stage 4”

Although untreatable, fortunately my condition was discovered at an early stage and living by the seafront meant an absence of hills and plenty of trouble-free walking and cycling. All was well for three years, but then even climbing the stairs became impossible. An ambulance ride to Worthing Hospital Lung Ward for ten days of tests and observations culminated in being discharged in May 2020 with a bleak outlook. I was told that I would be dependent on 24-hour supplementary oxygen and given just three weeks to live.

It was the height of the COVID-19 pandemic when St Barnabas came into the picture, and I accepted their offer of care at home. I was desperately ill and visiting staff from the hospice provided excellent support in those early days – advising on diet and a fitness regime to strengthen legs and arms, as well as providing me with a lung device to tone up flagging lungs and help with breathing control.

Image of Brian's artworks

“The staff are like little angels”

As the weeks passed, I started to feel my body strength improve and I began to visit the hospice once a week for chats, seated physio, breathlessness sessions, art classes and even walks around the grounds and a visit to their Chapel. Everyone was so friendly and having never needed care like this before, I was impressed with the range of support available – all freely given, and with no money expected.

Spending time in the art room was a highlight as I’ve always enjoyed drawing, painting and woodcarving and used to sketch the scenes from our campervan as we travelled around France. Whilst our campervanning days might be over, I found the chance to muck in and create art with other people who had similar problems really uplifting.

“It’s nice to know you’re not alone”

Regrettably trips to the hospice were halted at Christmas time in 2020 due to the pandemic. However, home visits by the wonderful St B’s community team continued and each time someone arrived we never felt rushed. They were there to answer any questions, however difficult, and always took the time to really listen. Knowing that the team are there to support Sylvie too is a comfort as unfortunately she’s been lumped with a lot of my care as I can’t do as much as I’d like.

Whilst the hospice is open for day visits again now, the effort of getting there is a bit too much for me at the moment. But the nurses keep in regular contact and I’ve also recently had a visit from Stevan, the artist-in-residence. As well as drawing, I spend my days doing jigsaws, crosswords, reading and just enjoying life at home. My lungs are slowly worsening day by day, and I know it’s a one-way street, but every morning I wake up and I’m happy that I’m still here. Each birthday and celebration is a bonus, and it is such a comfort to know that whatever happens, we can pick up the phone and someone from the hospice will be there, for both of us. Without St Barnabas, we wouldn’t have that safety net and I think more than anything, it’s nice to know you’re not alone.