Graham’s story

84-year-old St Barnabas House patient, Graham, has had a busy and interesting life. After serving in Cyprus and Germany with the Royal Artillery, he started a small retail business in Lancing and went on to be elected as Leader of West Sussex County Council. When he retired from politics at the age of 63, Graham pursued his passion for writing and became a journalist, working for many local newspapers. His adventurous lifestyle has also taken him on trekking holidays all over the world and now, more than ever, he’s determined to continue living life to the full having been diagnosed with Idiopathic Pulmonary Fibrosis (IPF).

Graham hiking

“I was struggling to get up the mountain”

The first time I noticed that I had a problem with my breathing was during a trekking holiday in India, 12 years ago. To get to our base camp we had to climb 6,000 feet up a small mountain and I couldn’t understand why it was such an effort. I’ve always been very fit and used to doing a lot of sport, but there I was watching people gaily ploughing ahead whilst I was literally on my hands and knees. It was a terrible struggle, but I knew I had to make it to the top as that was where my tent was as well as all our food and supplies for the trek!

When I got home, I went to see my GP and after lots of tests I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) – a condition that scars the tissue in your lungs and makes breathing increasingly difficult.

Graham in india

Doctors have told me that I only have a certain amount of time to live - but don’t we all.  And so, the longer I can keep healthy and active, the better. And that’s where St Barnabas House has been an enormous help.

“I was a supporter of the charity, now I’m also a patient”

There’s no known cause for IPF. I’ve been living with the condition for over a decade now and I guess I’m lucky as it’s been a slow onset. It’s only in the last year that I’d say it has started to impact my life. I just haven’t got the breath anymore, it’s as simple as that. Normal people take breathing for granted, but when you can’t get much oxygen into your lungs you start to economise on what you say and what you do.

I wasn’t worried about being referred to the hospice as I’ve always supported the charity in any small way I can – through my work, by attending events, and once, even skydiving with my grandson to help raise funds. I admire the whole concept of a local hospice, and now I am lucky enough to be enjoying some of the benefits.

Graham at the hospice

The other people there all have respiratory problems too, so it's nice to be around others who understand. There’s a lot of laughter and I think we all go home feeling fitter and more cheerful than when we arrived.

“There’s always a lot of laughter”

My first introduction to the hospice as a patient, rather than a supporter, has been through their Living Well Service which helps people like me to manage the challenges and lifestyle changes that can arise from having a life-limiting condition. Earlier this year, I started coming along to a ‘Mindful Moments’ class led by one of the hospice counsellors – a bubbly lady called Chris. It’s a mixture of relaxation and gentle movement, and being new to mindfulness and meditation I wasn’t sure what to expect. However, I found the experience so calming and uplifting that I kept on coming back.

For the last six weeks, I’ve also been enjoying gym sessions run by Tiz in the Therapy Team. I’ve always been a person who exercises, but unfortunately my condition means I can’t charge around like I used to! Coming to the hospice gym each week means I can continue doing something physical which is a real bonus. We get up to all sorts – from throwing balls to climbing steps and playing games.

“I feel very at home at the hospice”

Strange as it may seem to some, the hospice is not a gloomy building like you might expect. It’s a place of light, laughter and enjoyment. Now, instead of sitting in the house I have somewhere I can go where people are trying their hardest to help me live the best life I can with my condition. It also means my partner can have some time to herself, knowing that I am being looked after.

Unfortunately, my breathing isn’t going to get better and gradually I will have to use more oxygen. It’s a journey, and there is a finality to it, but I’m 84, I’ve had a good life, and I accept what’s coming. I’m just so grateful for all the services St Barnabas provides and with their help I’m determined to enjoy life as much as I possibly can, particularly with my family. I can only imagine what it may get like towards the end, but it’s a relief to know that whatever happens I have the hospice on my doorstep.

Could you help us continue to support people like Graham?

It's costs over £9 million a year to run St Barnabas House and the majority of our funds come directly from people like you who generously fundraise for us. By taking part in a Skydive, like Graham has, you'll be able to raise money for your local adult's hospice while also remembering a loved one you've lost.

Take on a Skydive!