The cancer carers

IN one of the quiet consulting rooms at York District Hospital's Cancer Care Centre, Pauline Miller has been getting a friendly ticking off. She and her family have just spent an 'awful' weekend worrying unnecessarily that her breast cancer might have come back.

She received a 'recall' letter from the breast screening service on the Thursday, with a request to attend hospital on the following Monday. The last time that happened, six years ago, she was told she had cancer.

The thought that the cancer may have come back was almost too much to bear for Pauline, who is 58. She knew she could have called her Macmillan breast care nurse Lynn Moffatt at any time over the weekend, but she was afraid to do so.

"I didn't really want to ring Lynn because I thought she might confirm it," she says sheepishly.

So she, husband Brian and daughter Helen worried for the whole weekend, only to find that it was a false alarm. Hospital staff wanted to check a minor inconsistency between two X-rays.

Lynn could have set her mind at rest straight away, Pauline accepts, which is why she is in trouble. "She's getting a telling off," Lynn says, wagging a finger. "She didn't ring me!"

Over the past six years, the two women have become good friends. Lynn was there when Pauline was first diagnosed, and helped her through her treatment and recovery.

That original diagnosis came as a terrible shock, Pauline remembers. After her first visit for routine breast screening at the age of 52, she had been asked to come back. At first she had thought nothing of it but she was soon having further X-rays and a biopsy. Then a doctor broke the news. Brian was called in a few moments later to be told.

"It was a very great shock," Pauline admits. How did she cope? "I didn't really. I had to collect my daughter from school and tell her. I couldn't sleep and went walkabout around York."

She had two lumps in her breast, one quite large. Ten days later, she was in hospital for surgery to remove the breast. It felt like a kind of bereavement, she says. "Because you have lost part of yourself."

She did not want to have reconstructive surgery as she couldn't face the thought of further operations. "And when you're dressed, you just look like anybody else any way."

But she was desperately glad that Lynn and her two fellow Macmillan breast care nurses were there. They were able to visit her during her two weeks in hospital and explain about the surgery and the follow-up chemotherapy she needed. They also talked to her about the drugs she would have to take for five years to help prevent any recurrence.

"All three of them have a very, very caring nature," Pauline says. "They were there in the beginning, and to be able to talk about any worries you had was so important. There were a lot of personal things I could not have talked about to a male doctor - periods and sexual things. I knew I could ring Lynne up at any time, and that helped me get through."

A few years ago Lynn suggested that Pauline become involved in setting up a support group for breast cancer sufferers in York. This brought the two women even closer together.

The group now meets on the first Monday of every month between 6-8pm, at the Cancer Care Centre. It offers a chance for women to share experiences - and for those who have been newly diagnosed to talk to those who have been through it all already. One or more of the Macmillan breast care nurses are usually there as well - but those who have been recently diagnosed really want to talk to women such as Pauline, Lynn says.

"It is a big boost to see people like Pauline who have been there, done that and come through it."

The role of specialist nurses is vital in helping people come to terms with cancer, Lynn believes. Hospital clinics are often very busy and don't always have time to spend with patients.

The Macmillan nurse is there from the beginning, when the condition is first diagnosed, to provide support and information. They give patients a number they can call at any time if they want to talk; and set up a meeting with patients, at the hospital or in their own home, to talk through any worrying issues before surgery. They follow patients through treatment and beyond - and because they are all specialists in breast cancer, they know the questions and worries patients have.

Probably most important of all, Lynn says, is that patients have somebody at the end of the phone they can turn to when they are frightened or worried. "That's absolutely vital," she says.

Not only breast cancer patients benefit from Macmillan nurses in the York area. There are three breast care specialist nurses, but also two hospital palliative care nurses who are expert in pain management, five Macmillan community nurses who visit people coping with cancer in their own homes, and a colorectal specialist nurse who works with bowel cancer patients.

Now Macmillan is looking to expand its service in the area. A £400,000 York Appeal is to be launched with the Golden Jubilee Celebration Concert at York Minster at 7.30pm on June 1. The money will fund a head and neck specialist nurse, a lead cancer nurse for York and a GP facilitator. All three should be in place by the end of September.

The head and neck specialist nurse will work with people diagnosed with cancer of the face, neck and throat, in just the way the breast care nurses work with breast cancer patients.

By its very nature, says Macmillan service development manager Denise Barker, cancer of the face and throat can be devastating.

"There are huge implications for these patients with 'body image' issues and other problems," she says. "If you have had your voice box removed, for example, how do you hold a conversation? If you're a person whose social life has revolved around going out to dinner with friends, the impact on that person of having something like this is tremendous. So it is not possible to overemphasise the importance of this role."

The lead cancer nurse will be responsible for co-ordinating the work of the other Macmillan nurses, ensuring that patients get the best support and care possible. And the GP facilitator will talk to local practices to ensure they are aware of what Macmillan nurses can offer patients.

In other words, an improved package of care and support all round for some of those who need it most. And what better cause could there be than that?

- For information about the Macmillan appeal, call 01904 651700. Tickets for the Minster concert, featuring Haydn's Creation, on June 1 are still available, priced £20, £15, £12 and £7, from York Theatre Royal box office on 01904 623568. Proceeds go towards the appeal.

- The York Breast Cancer Support Group is holding its own separate fund-raising day at the Assembly Rooms, York, on Saturday June 29, proceeds of which will go towards the running of the group. Call Pauline Miller on 01904 792759 to find out more.

Updated: 10:37 Tuesday, May 21, 2002