Annabelle’s story – supported by Phyllis Tuckwell
27 August 2018
Annabelle has been a patient of the Royal Surrey County Hospital for over twenty years, and her condition, Chronic Obstructive Pulmonary Disorder (COPD), has worsened over that time.
During a routine hospital visit, one of the nurses there suggested to Annabelle that she might benefit from the support which we offer at Phyllis Tuckwell, through our Living Well service. This service is designed to help patients and those closest to them manage the impact of their illness, cope with changes, improve their wellbeing and remain as independent as possible – so that they can get the most out of life. As well as medical and nursing care, it includes exercise classes, Social and Therapeutic Horticulture sessions, seated Tai Chi, cooking, meditative painting, art and creative writing groups, counselling, chaplaincy support, and sessions on topics such as how to cope with anxiety, manage stress and learn relaxation techniques. However, Annabelle was initially very apprehensive about going to a hospice when she wasn’t in her last days of life.
“I thought ‘a hospice? No, I’m not really ready for a hospice,” she says. “In my mind you went to a hospice to peacefully die. Well, how wrong I was. How very, very wrong.”
Annabelle came to one of our Open House sessions which are held at the Hospice every Tuesday from 2pm to 4pm. “I came feeling that I was in totally the wrong place,” she says. “I didn’t need a hospice; I was going to be alright. Later, yes, I might need a hospice, but not now. My surprise was that I did need the Hospice.” At the Open House session, Annabelle met one of our nurses, Karen, who manages our Day Hospice sessions. These sessions run on Tuesdays, Wednesdays and Fridays, from 10am-4pm, and provide patients with access to all of our Living Well services. Annabelle was offered a set of twelve weekly Day Hospice sessions, and came along to her first one the following week.
“The welcome when I arrived – well, I felt as if I’d been coming for years. Not only that, I had a wonderful cup of tea, and then someone came and said ‘would you like a massage?’, so I had a soothing back massage, which was wonderful. I often have back, shoulder and neck massages there now, and they really are lovely. Then lunch, well, the best omelettes in the business. Then relaxation classes. Well, that was the first Wednesday. The next Wednesday they said ‘we’re going to do gardening’ – I thought ‘gardening?!’. But yes! We met Lisi, one of the Occupational Therapists at Phyllis Tuckwell, and she talked to us about the restorative power of nature, and how gardening can reduce stress levels.
The atmosphere and the joy of going to that class were incredible. You forget about yourself.
You’ve got your arms covered in mud – with special gloves on of course, to keep your hands clean. You have your flowerpots, and earth, and little stones, and you actually are creating something. I’ve potted up a beautiful rose and made a herb garden, a little rockery and a dish of dried flowers which I’ve still got at home. You go in and start your class, and you think ‘oh my breathing’s bad, oh I must turn up the oxygen’, but within ten minutes of being in the room you’ve forgotten about oxygen, you’ve forgotten you can’t breathe – you can breathe, you can do it, you’ve done it.”
“I have a delightful volunteer driver who picks me up and drives me to the Hospice and home again. He has been driving people to and from the Hospice for over ten years; it’s very generous that there are such people who will do this.”
As Annabelle lives in Guildford, staff at the Hospice told her about the services we offer at the Beacon Centre, which is close to her home.
“To me the Beacon Centre was part of the Royal Surrey,” she says. “I didn’t know I could go to Phyllis Tuckwell services there.”
Annabelle joined one of our exercise classes, which are run by our Physiotherapists. “It may sound funny for someone on oxygen,” she smiles, “but it is such a tonic. There are nine or ten of us and it’s a wonderfully friendly, welcoming group. The exercises are very gentle, so you can forget leotards and slinky tights and things like that, not a bit of it! We do very gentle walking, arm exercises, seated exercises, we use small hand weights – it’s nothing like a gym. You do three minutes of each exercise and everything is done at your own pace. It’s not a competition. If you went to a gym they’d say ‘oh come on, you can do this’, whereas at Phyllis Tuckwell they say ‘well try this and if you can’t it’s ok’. And there’s even the chair which you rest in for three minutes. It’s a great confidence-builder; it shows you the things you can do. And of course afterwards we have a cup of tea and talk about how we’ve done.”
Friendship and support are one of the most important things that Annabelle has found at Phyllis Tuckwell. “The care, the love, the help, the understanding, have all been unimaginable,” she says. “It’s like a comfort blanket.
“Walking around with an oxygen cylinder, you think ‘well I’m the only person on this, aren’t it, because you’re very aware of this piece of machinery – but when you come to Phyllis Tuckwell there are other people with that piece of machinery. There are other people who are far worse than I am. But yet we’re all the same. I was unwell before Christmas and couldn’t come here for three weeks, and when I came back it was like going back home. There were my friends still there, still chatting, still moaning about the weather, but never moaning about their illnesses. It teaches us to be positive. And the laughter. Do you laugh in a hospice? By gosh, you do in this one! The camaraderie among patients – it’s a friendship group and I’m quite sure with some of the people I’ve met here that that friendship will go on, and we will pick up the phone, and it won’t be ‘oh I’ll see you again’ because we know we will. It is one big family. A very, very happy family.”
Annabelle hasn’t always found it easy to be positive about her illness. “COPD is a very frustrating condition and I get very angry with it,” she says. “It stops me from doing things.” It isn’t only COPD which Annabelle has had to contend with. Some years ago she was diagnosed with breast cancer. Although she recovered, the cancer returned and she had to have surgery. “That, together with my COPD, made me quite an unhappy person and very much ‘why me?’,” she explains. After talking to Annabelle about how she was feeling, Karen suggested that she start seeing Sophie, one of Phyllis Tuckwell’s counsellors. “I was feeling very low,” says Annabelle. “I had very low self-esteem. You think ‘oh I can’t do that because of the oxygen; I can’t do that because I can’t breathe’. Through counselling I was taught to stop thinking like that. I can’t change my lung condition, but rather than let it run my life, I can run my own life, and not let my lungs govern me. We don’t think about our breathing normally, day-to-day, and that’s how I’m trying to be – although truly some days are more difficult than others. Through counselling and talking to people at Phyllis Tuckwell I’ve learnt to get my life back a little bit, and as the weeks have gone on that’s become greater. I’m more confident; I’m more positive. I don’t think ‘why me’ anymore. It was me; I can’t change that. The depression that can go with cancer and certainly with COPD as well is very, very frightening and you reach a low in your life when nothing, really nothing is worth it. Why bother? Why bother to put any make-up on? Why bother to do your hair? There’s no point. Who wants to go on anyway? And then you get to Phyllis Tuckwell, and you walk in the door thinking ‘what am I doing?’ Twelve weeks on I know exactly what I was doing.
Phyllis Tuckwell isn’t a miracle cure but, gosh, it gives you the urge to want to do more. I want to come back next week and the week after, in fact for as long as I can.”
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