The woman with 50 tumours

THE operation was supposed to be straightforward, nothing for Carol Hamilton to worry about. And as she woke up, still woozy after going under the surgeon’s knife, the 47-year-old expected she’d have a couple of days to recover and then be right back to normal.

By The Newsroom
Tuesday, 8th May 2012, 1:00 pm

Her mind was, she recalls, foggy from the morphine that was taking the edge off her discomfort. But the words could not have been any clearer. Tumours, she heard them say.

Fifty of them.

“I couldn’t believe it,” says Carol, of the horrifying moment she learned the most devastating news imaginable – her body, the one that she’d pummel at the gym four times a week and that stood her in good stead on ski holidays and throughout ten parachute jumps, was a mass of cancerous growths.

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“I was absolutely horrified,” she adds. “One tumour would have been bad enough. But they were talking about 40 or 50 suspicious nodules, some really quite big. I was in total shock.”

Today, Carol sits at home in Sighthill contemplating what brief future she has left. She is nothing if not practical and refreshingly pragmatic – matter of fact, she explains that her will has been drawn up to save any hassle for her family and plans are firmly in place for her cremation.

She has even noted down some songs she’d quite like played on her final journey. Clearly, she’s not lost her sense of irony since being diagnosed with terminal cancer – one song she fancies is Freddie Mercury singing Queen’s powerful and deeply poignant Who Wants to Live Forever.

“I think it sums things up,” she smiles.

“None of us is going to go on forever. And I happen to know that I’ve less time than I thought I might have. And what’s left of life has to go on.”

Still, the news that she has so many tumours growing in her abdomen, feeding away and stubbornly resistant to any treatment, has been devastating.

Oncologists say there’s nothing they can do, and that it’s simply a matter of time spent waiting to see how aggressively they develop.

They might not do very much for months and months, they’ve said. Or they may follow the pattern of the earlier cancer Carol thought she’d beaten – “You’re one of the lucky ones”, nurses told her back then – and expand so rapidly that Carol runs out of precious time much faster than she’d hoped.

Which is why she’s determined to enjoy every second she has left, whether it’s sitting in her suntrap garden listening to the song of a chaffinch in the tree that overhangs her summerhouse, or booking a solo holiday to her favourite beach resort where she’ll rise early and sit, watching the waves gently break onto the shore. Just quietly stroking her two cats, Freddie and Felix, or keeping fingers busy making jewellery.

Simple things she wouldn’t have time for before. But, she says with a wry smile, one thing living with death does, is completely change your life.

“It’s changed me as a person,” she explains. “I’ve realised what is important and what isn’t. I have more time for simple but pleasurable things in life. I don’t rush around anymore.

“I walk down the street and I hear the birdsong. I look at the sunset and the blossom on the trees – of course, they were always there, I just never really had the time to pay attention, everything was rush here, rush there.

“It’s made me aware that you have to live life. You certainly can’t put life on hold. “

That could be a sobering message for us all to take heed of. For if anyone knows how fate can turn on a sixpence, it is Carol.

Like the rest of us, she used to go about her day-to-day business, dashing to work, skipping tea breaks and grabbing lunch at her desk at Standard Life, where she worked as a customer services rep, only to battle her way home on the bus, through gridlocked traffic that some days took her up to an hour.

There wasn’t much time to relax, but at least she made sure she looked after herself – hitting the gym regularly to keep fit, saving up for precious holidays to Turkey, where she’d meet up with friends to soak up the stunning scenery of Olu Deniz.

Losing her mum, Maureen, to breast cancer in 1997 at the age of just 53 left Carol reeling. And when she began to experience abdominal pains, of course she went to her GP to have them checked out.

“I’d had bad periods for a number of years, bleeding and a swollen abdomen,” she recalls. “But I was told things like it was my age, or I was overweight or hormonal because I hadn’t had children.

“But some days I’d go to work and I was in so much pain I was doubled up at my desk. I couldn’t believe that was supposed to be normal.”

A change of GP led to devastating news in 2006 – a tumour was nestling in her abdomen and she needed radical surgery, a hysterectomy and drugs.

“The name of it was extra uterine stroma carcinoma arising in endometriosis,” she says, the words tripping off her tongue now, but that October she needed to ask the doctors several times to explain what it meant.

“I was told it was a tumour outside the uterus, caused by endometriosis. I must have had endometriosis for years – maybe if it had been caught, I wouldn’t have got cancer. The surgeons removed as much of the tumour as they could and gave me a drug to reduce the oestrogen which it seemed to feed on.”

Six months later a scan showed the drugs had not worked, the tumour had grown rapidly. This time it was huge – an incredible seven kilos, more than a stone.

Carol had surgery to remove it and was told the signs were looking good.

“Everything seemed to be ticking along,” she says. “Every time I went to hospital I was told I was one of the lucky ones.”

But an operation last March to repair an incisional hernia – the result of so much surgery to her abdomen – proved otherwise. When surgeons peered inside, they discovered so many growths it was almost impossible to count them all.

“I’d had a scan just two months earlier which was all clear. I was hooked up to the morphine when they told me. Admittedly, I went a bit doolally.

“I thought ‘oh my god, how long have I got? They can’t tell me, though. The cancer is very rare, and they don’t know enough about it.

“There’s a link, though, between stress and aggressive cancer – I look back now at how stressed I’d get at work, how I rushed everywhere all the time, and wonder if that’s somehow to blame.”

Since then, Carol, of Parkhead View, has had chemotherapy that appears to have made little difference to the tumours but has left her with persistent aches and pains and crumbling teeth, and her long blonde hair is now a distant memory.

She has had to quit work – a financial challenge – but support has come from a new service for cancer patients in her area, Westerhaven Macmillan Cancer Information and Support Centre, which will officially open today.

Developed in partnership with Macmillan Cancer Support and Wester Hailes Health Agency, it provides information and help for an unusally high number of cancer patients and their families in the area – vital, says Carol, when confronted by the nightmare of trying to figure out how to live through the worst diagnosis possible.

“When you’re ill, the last thing you want to do is fill in forms and fight over benefits,” she says. “It’s hard enough. The support I’ve had from Macmillan has been amazing. I’m about to start a ‘mindfulness’ course, which is all about living in the present and being positive.

“You have to be practical,” she adds, “because there’s no other way to be. So my cremation is paid for and I’ve made lists of what I want to happen when the time comes.

“In some ways I’m fortunate,” she says with a resigned shrug. “I am out of the rat race, I can stand back and I can enjoy quality time.

“My life may not be as long as I’d like, but I’m going to make the most of every day.”

Support for patients when they need it most

Westerhaven Macmillan Cancer Information and Support Centre was developed amid concerns over the apparently high incidence of cancer in the area combined with a lack of support for patients.

As well as providing a free and confidential support service, access to a community dietician for nutritional advice, free counselling and complementary therapies, such as massage, the service also provides benefits advice by appointment in the centre or home visits.

Linda Arthur, the manager of the Wester Hailes Health Agency, says: “Westerhaven was born out of a local GP, Dr Sineaid Bradshaw, noticing the high incidence of cancer in the Wester Hailes Medical Practice. Sineaid approached the Health Agency to ascertain how we could work in partnership, which resulted in a study into the local area that revealed a high incidence of cancer and little or no support for patients and their families.”

Elspeth Atkinson (pictured) director for Macmillan Cancer Support in Scotland says: “Cancer will be the toughest fight many people will face and it is important that those affected by cancer in south-west Edinburgh have access to the support that they need.

“It’s not until someone is affected by cancer that they realise how it will affect them physically, mentally and financially and it’s vital that people have somewhere to turn to with questions and concerns.”

The drop-in service is available on Tuesdays, Wednesdays and Thursdays between 10.30am and 3pm at 1 Hailesland Road. Call 0131- 442 3126 for more information.