I work at St Leonard's Hospice in York, which opened in 1985. We are currently celebrating our 30th year. It's an independent charity, providing specialist palliative care and support for local people with life-threatening illnesses. We have a 20-bedded in-patient unit, day care, a hospice-at-home service, and a lymphoedema outpatient clinic. It receives some public funding, but the majority of the running costs have to be raised from the local community.

I'm the lymphoedema Sister, and run the nurse-led lymphoedema clinic three days a week. Most of my time is spent working with outpatients who need specialist support to manage their condition; but I'll also work with any in-patients who require my skills.

Lymphoedema is a swelling that develops as a result of an impaired lymphatic system. It can't be cured, and it commonly affects cancer patients, often as a side-effect of treatments. It's seen as swelling, commonly in the limbs, but it can affect other areas of the body. It can lead to immobility or pain, discomfort, loss of function, anxiety, depression, and altered body image.

I find my work deeply satisfying. The reward is to help a patient achieve something that's important to them, or improve their symptoms. If I can, through using bandaging and massaging techniques, reduce the swelling, and help a person wear a special pair of shoes or manage to ride a motorbike again, then I feel my time's been well spent.

I had very little life experience of death until I started my nurse training. Then, from the age of 18, I was regularly encountering hospital deaths. I saw it as part of the job. You never forget the first experience you have, though. Mine was quite a traumatic one: an unexpected death with no family there, on a medical ward at 6 a.m. at the end of a long night shift. Lots of doctors were there trying to resuscitate this elderly patient, and then curtains were drawn around and that was it: everything and just nothing. But I thought, This is how life is. I've got to cope with it. No time for tears or emotions.

But I thought it could be so much better, and treated with so much more dignity. I was really inspired by the work of Dame Cicely Saunders. Sometimes it is just about sharing the journey and being alongside the patient, listening, giving that person your time. That matters.

I was fortunate to work in a hospice in Leeds for a year. At the time, I was considered to be too young to devote my career to working with the terminally ill; so I trained as a midwife. But I always felt a longing to return to hospice care. For a while, I worked as a volunteer nurse at St Leonard's, but when a job became available I just had to apply.

I'm very aware of distinct changes in the hospice movement. It's a national thing, not just where I work. Death is much more medicalised. We used to have more teamwork and nurse-leadership. I'm not sure that patients altogether realise that death is very close, because we're not as good as we were at talking to patients. They used to be having their hair done and a glass of sherry. Now, some are still having palliative chemotherapy or hospital appointments until they are dying, and we have more doctors, more drugs and treatments.

I don't think we'll ever go back to those days. Hospices have changed to provide symptom-control, and some people choose actually to die in their own homes. We mustn't think it's entirely negative - a lot of good has come about. But some of the more spiritual questions are being squeezed, and people don't have the time to reflect as they draw near to the end of their lives.

I have a wonderful family. Paul and I have been married for 14 years, and we have two boys, Harry, aged 12, and Tom, aged ten. Tom has a rare chromosome disorder and needs lots of care.

When I reflect on my life, I sometimes think that God has been training and preparing me through some of my nursing and midwifery experiences to be the mother of a severely disabled child. The last ten years have been something of a challenge, often likened to living on a rollercoaster, but as a family we have been so blessed, and our lives are richer for the experience.

God is definitely there and helps us, particularly during the tough times. When our son is poorly, it's hard, but we just take a day at a time and don't plan too far ahead. If nothing else, recent years have taught us as a family to live in the moment, and that is a blessing. We're fortunate to receive respite care and support from our local children's hospice and the numerous healthcare professionals in our lives.

OTHER STORIES

Just a nurse ‘who did her duty’

Edith Cavell was executed 100 years ago. A vicar’s daughter, her faith was at the heart of all she did, writes Diana Souhami

It is hard to recall a first experience with God. God's always been there waiting. I didn't grow up in a churchgoing family, but I remember loving a book of Bible stories. As a teenager, I started to attend church, encouraged by a teacher, but it wasn't until my early twenties that I experienced the presence of the Holy Spirit. I remember feeling quite overwhelmed and truly alive.

I feel that my experience of God is constantly going through growth and change. Increasingly, God is present in my life, and asking me to share something of my life with Tom.

 
I have experienced the presence of God, just talking with patients. I'll always remember being with a hospice doctor talking to a young blind man in his early twenties, so calm and dignified, just days before his death, and feeling the presence of God in his room. Time felt suspended. My senses were totally alive in that moment. The memory of this moment will always stay with me.

 
I had a similar encounter with God when Tom was three weeks old, in intensive care. I knew things weren't going well, and he was having seizures and fits. One morning, he had several seizures, alarm bells were ringing, and I was asked to leave the room. I knew it was really serious and sat alone in a little coffee room, watching from a distance, wondering, why do I feel so calm? I felt suspended, very calm - and I think it was God alongside me, saying, "Everything will be OK."

It took about five years to get a grip of how life was going to be. Unfortunately, winter seems to be a particularly bad time. Tom had five or six admissions to hospital over this winter. We never thought this would happen to us, but so much good has come out of it. We just enjoy now - it's a great blessing. We decided that we'd both work part-time. We have real quality family time. I look at other people on a treadmill of going out to work all the time, and know that we have a blessing.

We don't know what Tom's prognosis is. He may outlive us, but he may not. It's an uncertain future, but we think we'll just accept that.

There's also a lot of laughter and humour in these situations. One day I tried to clean my son's teeth. He choked on the toothpaste and I had to dial 999. I said to Harry: "Can you go and meet the ambulance?'" He was ten then, but he made them a cup of tea (Tom was recovered by then), and played them a tune on his trumpet, and we all howled with laughter.

I was so proud of him. He's grown up with this, you see. He just absorbs this as part of his life, and it's made him a beautiful, strong person. Of course, you do feel guilty as a parent because you have to spend so much time with your ill child; but we have a lot of support, and we're very lucky. Many parents don't have that.

I do love my home, and the beautiful surrounding Yorkshire scenery: God's own country. I would some day love to travel to see the Northern Lights.

I don't think I'm terribly ambitious. I'm content to let God decide what's next. But I do consider the completion of my first pair of hand-knitted socks to be one of my greatest achievements.

I'm not really an angry person, but it upsets me to see resources being wasted, or when people complain about the NHS. We're so fortunate in this country to have easy access to health care, and we take so much for granted.

I'm happiest at home with my family. I love just pottering about at home in the kitchen, doing a spot of baking with the radio on.

My parents have been a great influence. They taught me the value of hard work.

I pray for my family and the health of my children; but also those I meet in day-to-day life. Often the drive to work is where I turn to prayer, asking for help with patients and for myself so that I can work to the best of my ability in the day ahead. Watching the news and seeing pictures of world events also prompts me to pray.

If locked in a church, I wouldn't mind spending some time with the Archbishop of York. I've always found his words very inspiring and challenging. I'd just enjoy a good chat.

Julie Shepard was talking to Terence Handley MacMath. www.stleonardshospice.org.uk