“I’m under the care of St Catherine’s Hospice as I’ve got Cystic Fibrosis and am currently waiting for a double lung transplant.
I’ve been waiting six months but I could get a call anytime so I carry my mobile with me everywhere I go. It’s upsetting to think that if I get new lungs someone else has died but they’ll be leaving me an amazing gift – the gift of life.
I remember when I first heard the words ‘St Catherine’s Hospice’ I thought I’m not dying, why do I need to go to a hospice?
But a lot of people have the wrong view of what a hospice actually is. The lady who walks my dog knew of St Catherine’s and told me I’d love it here. She was right! She told me, “Don’t worry, you’re not going there to die or anything” but that was my first reaction. I worried that my lungs were too bad to operate on.
Today, I’m living my life day-to-day but I’ve always had a positive outlook. Once, I was in hospital and the doctors told my Mum I wasn’t going to make it through the night. I was in Intensive Care, covered in tubes with black tar coming out of my lungs, when I overheard that conversation. My response was to stand up and tell the doctors to F off. I have too many places to go and too many things to do to go anywhere yet.
Although I have a full time carer some days everything takes so much effort.
I keep a smile on my face even when I’m in dire pain, and my carer often says he doesn’t know where I get the energy to do that. I’d rather smile, be happy and enjoy myself as much as possible while I can though. I’ve always been a positive person – some people have a pity party and all they think of is themselves but when I do that, I feel my pain is worse and I’m more depressed so I prefer to look on the bright side.
St Catherine’s has helped with that, and helped me cope with my illness better. I attend the Living Well group at the Living Well Centre, and have been for four sessions so far. I find the staff friendly and helpful and it’s good to meet people in similar situations to me. I also have acupuncture, which helps with my pain relief, as I get a lot of pain in my lower back, arms, shoulders and ribs from coughing. My spine’s crumbling too which causes me pain and I’ve lost two inches off my height. I have meditation and reflexology at the hospice as well. It’s very relaxing!
Sometimes my pain gets very bad during the week but the therapies at St Catherine’s are such a wonderful benefit, I always think I just have to wait until Monday to go to the hospice where I’ll be helped.
The hospice has also given me somewhere to come and chill out and talk to people having the same sort of questions around the end of their life. I can’t speak to my carer, as he gets too upset, so it’s helped me a lot to have conversations around the end of my life here. The nurses have also given me advice about looking after my mother who has dementia.
Those kinds of conversations have taken the pressure off me. That’s important as stress can make me ill because my Cystic Fibrosis means I don’t have much of an immune system. I know I can phone the hospice any time and talk to someone and it helps knowing I have that back up system. When I come here my carer gets chance to relax too.
If I wasn’t coming to the hospice, I’d feel more apprehensive and I’d bottle things up more.
I can’t talk to my Mum, brother or carer so having someone to talk to that understands what I’m going though and can lend me an ear means the world! Some days are very good, some are bad but I’m really pleased to be coming here. It’s given me an outlet and a chance to make friends as I don’t get out much. It’s nice to have something to look forward to each week. At home my garden is my haven. I relax in the garden. I plant flowers to attract butterflies and bees and I have a summerhouse where I do art. I paint flowers, do colouring books, and make papier-mâché shapes.
It means the world to have St Catherine’s support.
The staff are real sweethearts ant it’s a sunny, helpful, caring, very happy place! I just feel sorry that not everyone in our local community can come here. I’d love for them to come as it’s been such a help for me.
I think people should consider supporting St Catherine’s because one day they might need its care or their relative might need it. People need to look at themselves and consider where they’d like to be cared for or looked after if they started to get ill. Everyone will get ill at some point, and no matters what happens, there comes a point that everyone needs help. If you’ve supported your local hospice you don’t feel guilty getting that help and it’s lovely that you’ve supported it for other people beforehand.
It’s important where we can that we take care of each other.
I don’t think we should sit around and do nothing. If you do that, what are you here for? The point of life is to look after each other. Be an ear for someone, hold a hand, be a shoulder to cry on – it’s so important. Lives are saved by doing that. People sometimes just need something there, listening. They don’t need you to fix anything. Encouraging words alone are important. Places like St Catherine’s give you that. They give you that word and that encouragement to live another day and push on.”