Tuesday 12 December 2017

Daffodil Day: 'I was under a black cloud, convinced that something awful was about to happen'

Being told to stay positive while undergoing cancer therapies can have the opposite effect. Loneliness can strike at any time, survivor Gerard Ingoldsby tells our reporter

Sense of impending doom: Gerard Ingoldsby found his experience of bowel cancer very lonely, despite fantastic support from his family. Photo: Michael Mac Sweeney/Provision
Sense of impending doom: Gerard Ingoldsby found his experience of bowel cancer very lonely, despite fantastic support from his family. Photo: Michael Mac Sweeney/Provision

Celine Naughton

A recent survey which showed that one in seven people with cancer feel they have no close friends they can talk to about their disease comes as no surprise to one of Ireland's leading experts in the field.

Turning 60 years of received wisdom on its head, Dr Paul D'Alton, head of the Psycho-Oncology Department at St Vincent's University Hospital, Dublin, says that coping with cancer is not always about the power of positive thinking. In fact, however well-intentioned the sentiment, telling a person with cancer to be positive can have the opposite effect by making them feel even more isolated than they already are.

In the world of psychology, the Kübler-Ross model of the five stages of grief - denial, anger, bargaining, depression and acceptance - is well-established. But according to Dr D'Alton, "there is no such thing as 'stages of grief'".

"Emotions don't progress in predictable stages," he says. "Somebody diagnosed with cancer might feel a rush of anger, denial, sadness and other emotions within 15 minutes. And those feelings can return at any point, in any order. It's not a linear process, it's erratic. Feelings can be all over the place."

Commenting on the recent Macmillan Cancer Support study of people diagnosed with cancer in Scotland, Dr D'Alton says Ireland offers an equally lonely landscape for cancer sufferers.

It's a vista with which Gerard Ingoldsby from Ballincollig, Co Cork, became all too familiar when he was diagnosed with bowel cancer at the age of 42. But it wasn't until 18 months after he received his diagnosis that he was hit by the loneliness of the disease.

"I'd been open all along about having cancer," he says. "I didn't want an elephant in every room, so if some people seemed uncomfortable at first, I'd try to bring up the subject to put them at ease. By doing that I found they usually relaxed and could talk about it. Many were shocked that someone my age could get this form of cancer."

The good news was that it had been caught early. A Stage 3 polyp contained in the lower colon was eminently treatable, the doctors assured Gerard. He went through an intensive course of radiotherapy and chemotherapy to shrink the tumour before surgery to remove it altogether. A further six months of chemotherapy completed his treatment, which was a complete success. So why, in April 2006, after he was given the all-clear, did he suddenly feel a sense of loneliness that threatened to engulf him?

"It wasn't depression, it was more a feeling that I didn't have a purpose or a focus," he says. "It felt like, 'Right, you're fixed. So what happens now?' That's when it hit me - feelings of isolation, severe anxiety and a sense of impending doom. For 18 months I'd had weekly reassurances from the hospital and suddenly they stopped.

"Despite fantastic support from my wife Mary and my family, I was under a black cloud, convinced that something awful was about to happen. Mary tried to reason with me, 'The awful thing has already happened - you got cancer.'

"My GP compared it with post-traumatic stress disorder. I felt that my mind and spirit needed to catch up with my body. My oncology nurse encouraged me to go to Cork ARC Cancer Support House. It was the best thing I ever did. From the minute I walked through the door, everything changed. Counselling, meditation and Tai Chi helped me figure out what was going on. Without their help and support I don't know where I'd be today.

"It's very difficult for family and friends to understand the feelings that are part of having cancer. Only another cancer patient has the first-hand experience to know what you're going through."

Now Gerard volunteers in the Irish Cancer Society (ICS)'s Survivors Supporting Survivors programme, where somebody with cancer can talk with a survivor of a similar form of the disease. He encourages anybody who's struggling emotionally to reach out and use this service.

"I've spoken to people at different stages of cancer. Some are very private and don't want to discuss it with their friends; others may not want their employers or co-workers to know. Sometimes the stress about things associated with cancer is worse than the disease itself. You worry about the impact it has on the family, and how you'll manage financially - things that people often don't open up about... it's not always a doctor you need, it's a shoulder, someone to listen."

And for family and friends looking for ways to support a loved one with cancer, rushing in with rapturous good cheer may not be the best approach.

"The bottom line is that cancer is a life-threatening illness, which brings with it a great deal of emotion, fear and uncertainty," says Dr D'Alton. "Humans don't cope well with uncertainty. We tend to lock down and isolate ourselves from others.

"People deal with cancer as they would with other difficulties in their lives," he adds. "If you're a pragmatic, task-focused type, you'll bring that approach to your dealings with cancer. Whatever way you choose to handle it is okay. Talking is by no means mandatory."

There is good news on the horizon, he says, with the government's new 10-Year Cancer Strategy to be launched later this year.

"For the first time, this includes key recommendations about the psychological and emotional needs of people with cancer," says Dr D'Alton. "It's quite a breakthrough, because it means that patients' emotional and psychological wellbeing will be factored into their medical care."

According to Donal Buggy, ICS head of services and advocacy, "being faced with a cancer diagnosis can be one of the most devastating things a person can go through, which is why emotional support is so vital, not just at the time of diagnosis, but throughout treatment and beyond.

"We're really proud that Gerard is one of our survivor support volunteers. Funds raised this Daffodil Day will allow us to continue running this service, which offers a one-to-one support programme, providing emotional and practical support to newly diagnosed patients," he says.

"All of our Survivor Support volunteers have had a cancer diagnosis. The volunteers have been carefully selected and trained to give support, practical information and reassurance when patients need it most. To avail of the service, patients can call our Cancer Nurseline on 1800 200 700, between 10am and 4pm, Monday to Friday."

The Irish Cancer Society's 30th Daffodil Day takes place on Friday, March 24. For more info, see cancer.ie/daffodilday. You can make a donation by visiting cancer.ie, calling CallSave 1850 60 60 60 or texting 'Daff' to 50300 to donate €4.

Five tips for helping a friend with cancer

Practical advice: Dr Paul D'Alton

1. Don't isolate the person by insisting they stay positive.

2. Don't know what to say? Try this: "I don't know what to say. I'm really sorry."

3. Never say: "Let me know what I can do to help." It's better to be specific. Say: "I can bring you to hospital on Friday," or "I can do your shopping," or "I can collect the kids from school."

4. Take the shoulder-to-shoulder approach, not eye-to-eye. Sometimes the best place to have a conversation is in the car, where you're sitting next to each other, both facing in one direction.

5. Never say: "You'll be fine." The person might not want to let you down by admitting that they feel anything but fine.

- Paul D'Alton

Irish Independent

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