Giving a voice to lothian cancer patients

MARY Mason answers her door with a broad smile. Her right hand flutters to her neck as she says hello in a voice which she later laughingly describes as sounding similar to that of Lauren Bacall.

It is certainly hoarse and a little deep. But she says - hand at her throat again - it wasn't always like that, despite her 25-a-day cigarette habit.

Mary, a 65-year-old grandmother from Livingston, was diagnosed with throat cancer on February 13 last year; cancer of the larynx to be more specific.

The tumour was so aggressive, that within ten days she'd had her throat cut open from one side to the other so her "voice box" could be removed along with her thyroid and one of the four jugular veins in her neck.

It was hugely invasive surgery which left her in intensive care for a fortnight. She had to learn how to talk again and to psychologically deal with the fact that to speak she now has to use a voice prosthesis - a valve implanted in her throat which she presses every time she needs to be heard.

She's also been left with some nerve damage in her right shoulder, has lost her sense of smell and much of her sense of taste, and needs to make sure she's always got a glass of water handy whenever she's eating, in case anything gets stuck in her throat.

The impact of throat cancer has been devastating. Yet Mary admits she didn't even know it existed until it struck.

Now, however, news that Hollywood star Michael Douglas is undergoing treatment for it, means throat cancer is suddenly headline news.

"It does seem that you need a celebrity to get an illness before people want to talk about it," says Mary. "I had never heard of it before and there are many people who have a total laryngectomy like me who feel that they are the only ones."

The 65-year-old actor appears to be taking cancer in his stride. He is undergoing chemotherapy and radiotherapy for fourth stage cancer, which he attributes to smoking and drinking alcohol, and says doctors have told him his prognosis is good.

Mary, a former social worker, believes having a sense of humour is part of the battle. "You need it to get you through these things," she says matter-of-factly. "You have to be able to laugh.

"At one stage, when my stoma (the hole in her windpipe through which she speaks] was closing up because I was healing so fast, I tried one of the voice boxes which you hold to your neck to talk. My grandkids fell about laughing, saying I sounded like a Dalek.

"I would have used it anyway, but I know two women who have them and they can't even face going to the shops because of it.

"I've been lucky, the prosthesis has worked for me," she adds. "At first I wore scarves to try and hide it, and if I went to the supermarket I just went to the self-service check-outs so I wouldn't have to speak to anyone.

"Now I don't care. This is part of me and so people just have to get used to it. I've had to."

Mary's diagnosis came after she'd been referred to an ear, nose and throat specialist at St. John's Hospital by her GP after complaining of recurring earache.

"My colleagues told me that I sounded like I had a chest infection but I couldn't hear it."

In fact she had a tumour pressing on her windpipe. Within a week she was at the Western General's oncology department.

"Everything happened so fast I didn't really have time to think about it, the cancer or what life would be like after. I thought I could go home the day after the operation. I was very naive."

Cancer of the larynx is one of the least common cancers in the UK: around 2200 cases are diagnosed each year, with one woman affected to every four men.

Smoking and drinking are key risk factors, as is poor diet and long-term exposure to high levels of wood dust, paint fumes or soot.

Mary has been told she may have developed cancer as a result of her smoking habit, but no-one could say for sure. Today she no longer smokes, but husband Jim and two daughters have struggled to stub out their habit. "I don't understand it after they've seen me in intensive care, but they're grown-ups, they make up their own minds," she adds.

It was about a fortnight after the operation before Mary was able to speak again with the prosthesis and intensive speech therapy.

To help her communicate, granddaughter Eleni Mason, 11, made her a book of hand-drawn flash cards. "I was so touched that she was thinking so much about the best way to help me," adds Mary.

Despite her upbeat exterior, Mary admits there were times when it was hard to keep smiling.

"You put on a brave face for your family, but you do need to talk to someone. At one appointment I saw a sign for Macmillan Cancer Support and I thought ‘I need to go and see what's available'.

"That's when I found out about Rosie Small's project."

Since the Livingston-based West Lothian Cancer Information and Support Service launched a year ago it has welcomed more than 550 people through its doors.

A partnership between Macmillan, West Lothian Council and NHS Lothian, it offers visitors a place to share experiences and is staffed by an experienced Macmillan nurse, Rosie Small, and trained volunteers.

"It's a wonderful place," says Mary. "Rosie's been fantastic when I've had questions about what's happening to me, and more practical things like benefits. I'd recommend it to anyone who has cancer."

Support is particularly vital for throat cancer patients. For while the condition has one of the best survival rates if caught early enough, it also has one of the highest rates of suicide among post-operative patients.

"It's such a change to yourself, I think a lot of people can't handle it," says Mary. "It can be difficult to meet others in the same situation to talk about what you're going through. That's why I decided to set up my own support group for people with specifically head and neck cancers out in West Lothian.

"Rosie helped, and now we meet once a month. We've about 14 members - one chap is 93 and he's just had an operation for cancer in his jaw. It's amazing."

She pauses. "You know, it's just good to talk." She laughs again. "Even if you do sound like this."

One Voice For All, head or neck cancer support group, meets at the Ability Centre, Carmondean, Livingston, on the last Thursday of every month from 6.30pm to 8pm. For more information contact Mary Mason on 07871-723 406.

For details of the West Lothian Cancer and Information Support Service contact 01506-777 604/2 or e-mail [email protected]. Cancer support is also available by contacting the Macmillan Support Line on 0808-808 0000 or by visiting www.macmillan.org.uk.

Creating a stir

TO mark the first year of the West Lothian Cancer Information and Support Service, manager Rosie Small is hosting a World's Biggest Coffee Morning event to raise money for Macmillan Cancer Support.

Visitors to the service can access a range of information on cancer, as well as stress management tips, dietary and nutritional advice.

It complements existing Macmillan services, including the West Lothian Macmillan Advice Team, which helps people affected by cancer access financial support.

Rosie says: "This service is open to people affected by all types of cancer.

"It is also open to their friends and family as a cancer diagnosis affects not only those with the disease but their loved ones too."

Rosie's World's Biggest Coffee Morning event will be held at the Carmondean Connected Centre, Livingston, on September 24 between 10am and noon.