JACKIE Waller is dying. The 61-year-old doesn't know exactly how long she'll be able to live with the pancreatic cancer which she was diagnosed with in April last year, but she does know in the not-too-distant future it will kill her.

Initially, the retired nurse was convinced she was suffering gallstones. She had all the right symptoms, but as Jackie was planning her birthday party and looking forward to a holiday with her grandchildren, doctors told her they had found an inoperable tumour.

"I went into hospital on the Thursday and remember thinking that it was just a minor operation and I'd be back home the following Tuesday," says Jackie, who lives in Harrogate. "I was in shock. I had so many plans, but in a split second the bottom fell out of my world."

As she waited for her daughter to arrive, the statistics she'd learnt as a nurse came flooding back. Remembering that only five per cent of those diagnosed with pancreatic cancer live beyond five years, any optimism drained away and disbelief quickly turned to anger.

However, Jackie is not one for self-pity, and while waiting to see consultants at St James's Hospital in Leeds she grew determined to take back control of the situation in the only way she knew how.

"It was good to have that time to internalise everything and to decide what I wanted to do before I ended up in the system," she says. "I had a lot of questions, some of which I knew they wouldn't be able to answer, but it gave me a bit of power back. There was obviously nothing they could do to get rid of the tumour, but I wanted to know what options there were and what other support was available."

Jackie now describes her relationship with the cancer as "an uneasy alliance", and having put off her first bout of chemotherapy to keep her promise to her grandchildren, her priorities post-diagnosis have remained largely unchanged.

"There is nothing I can do about the cancer, but there was no point putting everything I'd planned on hold," she says. "I knew my quality of life then was going to be as good as it got, so before I went down hill or began to feel the side-effects of the chemotherapy, there were certain things I wanted to do. I had the party for my 60th birthday, I went on holiday to Cornwall and those memories I really cherish."

It's exactly this kind of openness that the Government wants to encourage and its recently published End of Life Care strategy aims to give people more choice about where they would like to be cared for and die. Unfortunately, the launch was overshadowed by news the planned 2p rise in fuel duty had been postponed, and for Jackie it was another missed opportunity.

"I was listening to Health Secretary Alan Johnson on the radio," she says. "He said that press officers had pitched the story to the media, but some decided against covering it because the topic was 'too depressing'. I find that really sad. We make such a fuss about being born, yet we seem happy to sweep death under the carpet.

"If someone died when I was growing up in the 1940s before the funeral they were in an open casket in the best room of the house. In my lifetime death has become far too medical, and we seem unwilling to talk about the emotional side."

In the 15 months since diagnosis, Jackie has decided that if at all possible she would like to die not in hospital, but either in her own home or Saint Michael's Hospice in Harrogate, situated on the outskirts of the town and looking out over the Crimple Valley viaduct. She currently visits once a week as an outpatient, and these have given Jackie the chance to meet others in the same situation.

"Of course, I knew what a hospice was, but I did worry that it was going to be all about death and dying," she says. "However, when I arrived I found this really beautiful place and just felt immediately welcomed.

"For me it's like coming to see friends for the day, except one minute we can be talking about Coronation Street and the next about funeral plans. We may be all walking down slightly different paths, but we're on the same journey and heading for the same destination.

"When I was first diagnosed, I wanted to talk about the cancer all the time and that was hard for my family. Coming here has eased the burden on them and made me feel less alone. There was one point when I couldn't stop spring cleaning the house and throwing things out.

"I had a real fear of people coming and looking through my stuff after I'd gone. It was like I'd already been burgled. When I mentioned it one day at the hospice, so many other people said they'd done the same thing."

Jackie's daughter and main carer Nicky Tye has taken longer to come to terms with her mother's illness, and is honest enough to admit that without the help of the hospice many things would have been left unsaid.

"Often when I pick her up she'll tell me what she's been doing and it will start a discussion between us that otherwise we probably wouldn't have had," says Nicky. "When you're told your mum is going to die it's impossible to comprehend, but just knowing there is someone here, who not only understands what mum is going through, but who is looking out for the rest of the family is a comfort."

Both Jackie and Nicky are testament to the benefits of good palliative care, but the hospice's chief executive Tony Collins knows that in the past many medical professionals have failed to translate words into action.

"The Government's End of Life Care Strategy has been a long time coming," he says. "Palliative care is now taken seriously as a discipline, but it wasn't always the case. The whole premise of the NHS is based around curative treatment, and sometimes when doctors have to turn round and tell someone there is nothing more they can do, it's seen as a failure.

"What we need to do is give people real choice and do our best to remove any uncertainty. Jackie is a remarkable example of someone who is open about death, but many people find it difficult to talk about.

"Currently, 58 per cent of people end up dying in hospital, yet most would rather be at home or in a hospice. That just doesn't seem right, and if we talk through the options with people right from the start, it will make things much easier for everyone involved.

Since it opened 20 years ago, Saint Michael's has extended its specialist medical team and now offers complementary therapy alongside access to physiotherapists and social workers.

"When you're facing a complete unknown, the most invaluable thing is advice," says Jackie. "Inevitably, as the months go by you change your mind about certain things, but I have always felt supported in every decision I've made.

"When I first came to the hospice I talked to the doctor and we agreed that if I suffered a heart attack they would try to resuscitate me. But recently we've agreed that because my quality of life has already gone downhill this wouldn't be the right thing to do.

"Writing my will and planning my funeral have helped me deal with what's going to happen. Some decisions I've made haven't gone down well, but it has given me ownership over my own death."

Jackie, a practising Catholic, has told her family that she doesn't want anyone to attend her actual cremation, describing it as "the business end of death" and would rather they concentrate on celebrating her life. "It's been hard. If it were my choice I'd be there for the cremation," says Nicky. "But it's mum's decision and of course I totally respect it."

When it comes to any End of Life Care strategy, respect and understanding has to be what it's all about.


For more information about the work of Saint Michael's Hospice, call 01423 879687.