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How ‘taboos’ over the side-effects of treatment can affect recovery from cancer

Gary Hunter, who received two cancer diagnoses
Gary Hunter, who received two cancer diagnoses
Heather Monteverde, head of services for Macmillan (NI)
Claire McNeilly

By Claire McNeilly

Cancer sufferers face deteriorating health because of the social stigma associated with the perceived "taboo" side-effects of the illness, a leading charity has said.

The warning comes after a new poll revealed that one in five - or around 500,000 people in the UK - find it difficult to seek help because of embarrassment or shame, potentially putting their health and recovery at risk.

Macmillan Cancer Support said hundreds of thousands of people with cancer are facing side-effects that include anxiety or depression, sex and relationship issues, and bowel and bladder problems.

A survey carried out for the charity by YouGov revealed, however, that these and many other common side-effects of cancer are often seen by the public as taboo.

It also found that around a quarter (26%) of people with the disease said they have been reluctant to talk about issues relating to the disease because of how other people might react.

Macmillan has voiced concerns that shame and stigma over issues such as sex and relationships, or problems with bowels or bladders, is preventing people getting help for very common and often treatable side effects.

Gary Hunter (62,) a Comber father-of-three, was diagnosed with chronic lymphocytic leukaemia, a cancer of the white blood cells in 2008, and then with transitional cell carcinoma in 2011.

The retired Co Down man said it was difficult to cope both physically and emotionally with two separate diagnoses so close together and he admitted that he struggled with his mental health as a consequence.

"I was unprepared for the range and depth of problems I faced and my cancer-related issues fuelled an ongoing and vicious depression," he said.

"In my case it was probably one diagnosis after another in quick succession. It was quite a shock. I had to have a kidney out for the transitional cell carcinoma and chemotherapy for the leukaemia, but I thought I was doing okay.

"Surgery and chemo are gruelling, but once they're finished in many ways it feels like you're cut adrift and it's almost like entering another country without a road map.

"It took a while to get help because there's still a stigma about mental health, particularly here. In many ways it was easier to talk about the cancers than to discuss the depression."

Gary said he found the emotional toll of his illness harder to deal with than the disease itself, adding that his relationships with friends and family suffered, leaving him feeling isolated.

"I found it difficult to accept I needed help and I think this is something we, particularly men, aren't good at in Northern Ireland," he said, adding that his wife Helen (59), a nurse, has been "a great help".

"We need to talk about feelings and depression and we need to ask questions and accept the help that's offered."

The poll revealed that sex and relationships are the number one taboo issues in the UK, with more than half of people saying they found these issues hard to talk about, and 45% admitting they would struggle to even talk to their partner, close friends or family about them.

Other prominent issues include problems with bowels or bladder (46%), financial issues (46%) and feelings of sadness and depression (39%), all of which can occur as a result of a cancer diagnosis and treatment.

Patricia Thompson, a Macmillan clinical nurse specialist in urology within the South Eastern Trust who has treated Gary for 10 years, said it's heartbreaking that people like Gary can find it hard to ask for help.

"Unless we, as a society, get over our uneasiness, people with cancer will continue to struggle alone with serious issues when help is often just one conversation or phone call away," she said.

Heather Monteverde, head of services for Macmillan in Northern Ireland, said getting a cancer diagnosis can turn your life upside down and affect much more than just your physical health.

"We want people with cancer to know that whatever they're going through, they're not alone. Many of the 'taboo' impacts of a cancer diagnosis are treatable and Macmillan is here to help.

"The findings of this poll also show why it's so important that all the support needs of people with cancer are recognised and addressed, at diagnosis, throughout treatment and beyond.

"It's vital these 'taboo' side-effects don't slip through the net."

To get help from Macmillan visit macmillan.org.uk or call the support line on 0800 808 0000

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