Cancer care is so different when tables are turned

She watched patients wrestle with the debilitating toil of chemotherapy and soothed them through the nightmare of coming to terms with the seriousness of their condition.

When the scale of their fight began to overwhelm them, she used her wealth of professional expertise as a Macmillan Cancer Support palliative nurse to comfort them with kind words and gentle encouragement.

If anyone could appreciate the anguish and the harsh challenges they faced, then it must surely have been Mary.

Which made it such a particularly cruel twist of the rules when, without prior warning, cancer turned the tables on her. And suddenly the cancer nurse who devoted so much time to others, found herself cast in the role of breast cancer patient.

“It’s all different when it’s happening to you,” she says softly. “I thought I could understand how people felt when they were undergoing chemotherapy or when I tried to tell them what to expect when they have a mastectomy. Instead I found myself questioning everything I knew.”

Her professional knowledge of what lay ahead was both a help and a terrifying hindrance. Yet as she took time to talk through her deepest fears with friends, family and colleagues, Mary found the very same support and help that she had so often provided to others, now easing her through her own darkest days.

However as Talk Cancer, a new campaign launched this week by Macmillan Cancer Support, points out, if for some the shock of learning they face life threatening cancer is bad enough, then challenge of trying to actually talk about it, is sometimes almost as overwhelming.

Instead of sharing their problems, some bottle up fears and raw emotions when, says the charity, talking them through could actually be more therapeutic than they realise.

Mum of four Mary, 55, of Bathgate, now has a personal appreciation of how they feel – for she, too, was initially too scared of her diagnosis to feel comfortable discussing it.

“My role is to talk to families about cancer. I do it all the time. But when you get the diagnosis yourself, you find yourself too frightened to actually speak the words out loud. Because by saying them out loud, it makes it all real.”

It was 2008 and she’d gone for a routine mammogram – her first – confident that she would be fine. Discovering she was one of the 4000 Scottish women diagnosed every year with breast cancer left her reeling.

“I’d always taken the attitude that cancer isn’t about asking ‘why me?’ it’s more about ‘why not me?’,” she says. “Because of what I do, I’m very careful about checking for any lumps – I also knew I didn’t have any. I had no symptoms at all.

“So when I went for the mammogram, I thought it was all very routine.

“Then I got a letter for a recall ten days later. Even then I know there can be problems with the mammogram, it’s hard to read, so I wasn’t worried.”

At the Breast Screening Centre at Ardmillan Terrace, Gorgie, staff spoke gently of what would happen next, and the penny dropped.

“I suppose they were firing warning shots at me,” recalls Mary. “I recognised the language they were using and it was like hearing my own voice. They spoke of an ‘abnormality’ on the scan, they did an ultrasound and I noticed that they kept returning to the same spot over and over again.

“I was there for three hours. By the time they were finished they didn’t have to tell me, I already knew that I had cancer.”

Biopsy results the following week confirmed everyone’s suspicions. Mary had a multi-focal invasive tumour – which means it was present in more than two areas of the breast – and now along with husband Donald, 56, an engineer, faced the harrowing prospect of breaking the news to their family.

“My two daughters are 30 and 25, my sons are 26 and 22, they’re older and while it wasn’t easy, we spoke about it. But it was harder talking to my granddaughters – one was still a bit too young to really understand, but the other was four years old.

“I explained to her that I was ill and I needed to go to hospital and try to get better. It was hard, but I believe it’s far better to be open with even young kids and tell them what’s happening rather than have them hear snatches of conversations and go away worrying.”

According to Elspeth Atkinson, director of Macmillan Cancer Support for Scotland and Northern Ireland, talking through feelings and worries – even laughing if it’s in your nature to do so – can help everyone affected by a cancer diagnosis.

“It is important that, when going through something tough, like themselves or a family member receiving a cancer diagnosis, people speak openly about what they’re going through to ensure they get the right support they need,” she says.

Macmillan nurse Mary, who is based at St John’s Hospital in Livingston, agrees that talking about what’s happening helps everyone come to terms with what’s going on. “Speaking to family, friends and colleagues really did help. The conversations aren’t easy though,” she says. “It was difficult talking to my parents – just as it would be difficult for me if it was one of my daughters affected, naturally I’d be devastated.

“I became very aware of how awful it must be for a younger woman with a young family to be given the same diagnosis.”

She also became conscious how different actually undergoing treatment was to how she’d previously thought. “It was hard and I actually questioned myself as a nurse. I used to think I knew how people felt when going through chemotherapy, but there were things I hadn’t expected to feel.

“It wasn’t just the physical impact, there was the mental effect of losing my hair and the mastectomy. I found those very difficult to come to terms with.”

She underwent four cycles of chemotherapy, 20 sessions of radiotherapy and a further four of chemotherapy. Surgeons had to wait until her treatment was complete before attempting reconstructive surgery on her breast.

As the treatment took its toll on her physical appearance, Mary became aware how some people she encountered behaved differently towards her. “It was horrible losing my hair. I’d go outside wearing a scarf and was conscious that people would see me and they would know I had cancer.

“Some would say ‘hello’ but some just turned away and I’d hear later through other friends how shocked they were.”

The hardest part, however, was coming to terms with her own mortality – and confronting issues, like when to make a will, which she hadn’t thought much of before.

“Making a will is something we’ve now discussed. Even though I’m better, having gone through cancer you realise that you’re not immortal and these things need to be sorted so the family you leave behind aren’t left with a terrible mess to sort out,” she adds.

Now back at work, Mary has insider knowledge of exactly what her patients are facing and renewed determination to enjoy life to the full: “Although I’ve seen people who, sadly, haven’t survived cancer, I always tried to be positive, I didn’t dwell on what things could happen,” she says. “My attitude was ‘what will be, will be, get on and just enjoy life day to day’.”

• For more advice call the Macmillan Support Line free on 0808 808 00 00 (Monday to Friday, 9am-8pm) or visit www.macmillan.org.uk

Feel like it’s good to talk

Macmillan Cancer Support has launched Talk Cancer Week in a bid to help break down unspoken taboos surrounding cancer and to encourage family, friends and patients to talk.

“We meet a lot of patients and family members who feel they need to be ‘strong’ and bottle up their emotions. This causes great strain on relationships,” says Elspeth Atkinson, director for Macmillan Cancer Support in Scotland and Northern Ireland.

“Many people affected by cancer often struggle to admit they feel scared and alone,” she continues.

“Similarly, they can feel they shouldn’t care that their appearance might have been affected by their cancer treatment, even when it’s affecting them psychologically.

“Others can’t admit they’re struggling to pay the bills since their illness forced them to give up work.”

A cancer diagnosis has a ripple effect on family and friends, and some may also feel unable to talk through their own feelings, she adds.

“Relatives of people with cancer also often feel they must be strong for their loved one and so don’t want to access the support available.

“All of this means that many people often struggle to cope with cancer on their own, ignoring the practical and emotional help available.”