“I was diagnosed with lung disease in 2015 and, although it’s not classed as ‘terminal’, they call it ‘life-limiting’ – because it is going to shorten my life, but by how much, nobody knows. So although I live as ‘normal’ a life as possible, it’s never going to be 100% normal or even near. There’s no cure.”
“People think you have to have a terminal illness to come to St Clare, but that’s not true. You have to have an illness that affects your life, and the social aspect of your life.”
“My condition means that I get breathless and puffed out, and can’t breathe a lot of the time. I use a wheelchair when I’m outside the house. But on the whole I manage very well and am very independent, I like to get about.”
“When I was first diagnosed, they told me I had lung cancer. I had breast cancer back in 2002 and they thought it might have been secondary lung cancer. I was put on a high dose of steroids and started to pile on weight. For six months I was getting worse and worse, I couldn’t breathe – I couldn’t even hold a conversation. But there was a lot of support for me, cancer nurses were visiting me at home and making assessments. Eventually they did an open lung biopsy and they discovered that I didn’t have cancer, but an incurable lung disease instead. Suddenly all the help at vanished. Now that I didn’t have cancer, I wasn’t eligible for the help.”
“I was still being visited at home by the District Nurse who came to change the dressing on my biopsy wound, and I told her that I just felt so desperately lonely and abandoned.”
“I was sitting there with this horrible illness, and no help. I had loads of offers of help and care, and then when it wasn’t one illness, I was just dropped.”
“The district nurse suggested that she refer me to St Clare Hospice for help, and I wasn’t sure that it was the right place for me. But she explained that I could come to the hospice for day therapy, and to talk about my problems, and to find extra help.”
“I didn’t think for one minute that I would be accepted, because I didn’t think I had the right kind of illness. But I was invited a long to meet one of the nurses at St Clare for a chat and an assessment.”
“The first time I came to the Hospice I spoke to Claire, one of the senior nurses, and we spoke for a long time. Claire told me about the sort of help that would be on offer as an outpatient, and I was amazed.”
“I just couldn’t believe it. Before coming to St Clare, I felt that there was no hope. And I felt so alone. Just coming in to speak to the nurse at St Clare, made me like they had picked me up. I felt loved, and wanted, and cared for.”
“A few weeks later I was invited to come to the Hospice to attend a Day Therapy group.”
“The support I received was absolutely incredible. I looked forward to the group every week.”
“I would build up to it each week, just looking forward to the next session. Meeting the other ladies in the group was just such a support. You could say anything you liked, and you knew nobody would speak of it outside of the group. We could share our problems, and fears and worries – and the group would offer practical help, physical help, emotional support – offering to meet up outside of the group as well.”
“Nobody knew what was wrong with anybody in that group. What was wrong with you did not matter. What mattered was that everybody felt the same.”
“The emotional impact of finding out that you have a condition that cannot be cured is the same for everybody. The sheer horror – the loneliness and the feeling that you are on your own – is the same.”
“As well as the social aspect, and emotional support, there was also all the advice and care that St Clare gave me.”
“When I come to Day Therapy I know I can also speak to one of the nurses about my symptoms or how I am feeling. One time I came to a session with a chesty cough and I was really struggling. They arranged for one of the Doctors to come and see me, and he assessed me and gave me advice for how to manage it.”
“At St Clare, everything you need is in one place. And everything they do is centred around you, and your needs. It’s the sense of belonging that is so special, and just knowing that their support is always going to be there.”
“I really feel, and I can say this with all honesty, that if I hadn’t have been picked up by St Clare when I was, I wouldn’t be alive now.”
“I was so low – I could see no future. I could see nothing, nothing ahead at all. All I could feel was fear and loneliness. St Clare really did save my life. It really is true.”
“As well as the Day Therapy groups, I also took part in the creative sessions – doing both art and writing.”
“In the creative sessions you literally forget why you are at the Hospice. You just know that you are having fun, and getting messy with the paints! For those two hours you just completely forget everything else. I don’t know what’s wrong with anyone else in that room, and it’s not that I’m not interested, it’s just that it’s not important.”
“We are all just in the art room enjoying ourselves, exchanging views and ideas in fun surroundings – completely forgetting everything else that is going on in our lives for that moment.”
“When I am at home, I know I have my trouble and strife – and for the entire day I am reminded that I am not well. Just getting up to make a cup of tea is a reminder that I can’t breathe very well, I can’t move very well. But at St Clare, I am pampered! For the two hours I spend at St Clare, I just completely forget about it all. It is just so nice to switch off and relax – which is not easy to do.”
“I go to the creative classes and I can just sit there and create! I may not be able to make a work of art – but I thoroughly enjoy making it. It’s the process that matters. It is about mentally switching off from your illness. And I think that is what’s important.”
“Through the creative writing group I became able to write down a lot of my thoughts, and fears – to put pen to paper. I find myself writing at home as well – I actually ended up writing a few poems about how angry I felt, about my lot in life and just writing it down was very therapeutic. Eventually you get a flow of writing going, and it was only because of coming to the creative writing group that I was able to sit and write down my thoughts.”
“It was like coming to the creative writing group had given me permission, personal permission, to be creative in my writing and to use it to open up about my feelings and emotions.”
“Then you take that home with you, and carry on writing about your feelings and emotions. It is like the floodgates have opened – and it’s great!”
“It has actually started me off writing stories for my grandchildren about my parents, my Dad and Mum and Nan’s life. It’s like it has opened the door for me – and helped me to think that it is ok to write like that.”
“Coming to the creative sessions opens up a portion of you that you didn’t know was there.”
“I have always been creative, and I have always loved art, and although I’m not good at drawing, that really doesn’t matter. It’s like it’s gives you the permission to have a bash at it, to have a go. Whereas before I didn’t feel that I could do that. It doesn’t matter that my spelling isn’t great, or my grammar, as long as I am getting out on to the paper, what I feel. And that might be in writing, or typing or painting or drawing.”
“St Clare helped me to re-find that part of myself that had been locked away because of the illness.”
“Sometimes when you are ill, you feel like you are not able to be yourself. All you are able to be is your illness. You become consumed with being ‘an illness’ and you stop being ‘a person’.”
“For the first 10 months of having lung disease, I was a patient, I wasn’t me. I was somebody who couldn’t breathe. So I sat indoors. Struggling to get up and make a cup of tea, struggling to go out. I felt that I couldn’t do things because of my lung disease.”
“Illness takes away your independence. You become the illness that you have. And you start to think that is all you’re capable of. But St Clare has shown me that I am still me. Now I think I can do this. It sounds like a cliché, but it is so true – St Clare saved my life.”
“I have always been a very positive person, but I will admit, when I was diagnosed, I wallowed in my own self pity. I just couldn’t care less about myself. I couldn’t see the point in anything, because I just thought ‘You’re dying’.”
“Now, I don’t feel like that at all. Now, I feel like there is every point. I’ve got my positivity back. I’m back! I have turned my illness on its head. And I owe a huge debt of thanks to St Clare for that. I owe St Clare everything, seriously, everything.”
“You don’t have to be dying to come to St Clare. You need to come when you are diagnosed – the moment you are told that you have a life limiting condition that isn’t going away. So that they can help to counsel you through your diagnosis. And help you to live your life.”
“I have a debt of thanks to St Clare. I will do everything I can to tell everybody about St Clare. I can’t raise money very well – but I can raise awareness. And tell people how much St Clare can help them. I hope that by sharing my story, it will encourage more people to come to St Clare and to find out what they can do for you.”
Jennifer