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Shame and social stigma ‘putting cancer patients at risk’

Macmillan warns people with cancer face deteriorating health because they’re too ashamed to seek help with ‘taboo’ side effects

Thousands of people with cancer in Wales may be too ashamed to seek help with life-changing side effects that are considered taboo – potentially putting their health and recovery at risk.

Macmillan Cancer Support says thousands of people with cancer in Wales are facing side effects including anxiety or depression, sex and relationship issues and bowel and bladder problems. However, a poll for Macmillan by YouGov has revealed that these, and many other common side effects of cancer, are often seen by the Welsh public as taboo.

The poll also revealed that among those living with cancer in the UK as a whole, one in five (20%) – around 500,000 people – found it difficult to seek help with problems resulting from the illness because they felt embarrassed or ashamed.

Around a quarter (26%) of people with cancer across Wales and the wider UK say they have been reluctant to talk about issues relating to the disease because of how other people might react.

Macmillan is worried that shame and stigma is preventing people in Wales from getting help for very common and often treatable side effects, putting them at risk of deteriorating physical and mental health.

Ali, who was diagnosed with cervical cancer in 2015, said: “After my hysterectomy I was elated that my treatment was successful, but also haunted by what I had lost.

“For me, the most painful impact of cancer wasn’t the illness, or the treatment, or the worry.  It was the one thing that was never really talked about – how my cancer took away my fertility and a huge chunk of my confidence when it came to sex and relationships.

“I couldn’t help but ask myself questions like “I am less of a woman?” When it came to sex, I wasn’t even sure if everything would still work, whether it would be painful or if there would be any embarrassing side effects to worry about.

“It all felt like a huge loss of my femininity and it wasn’t until I talked about it, until I began to square away some of the things that cancer had taken away, that my healing process really began.

“No-one should be wracked with questions they are too self-conscious to ask, or feel too embarrassed to ask for the support they need.”

For Clint, who was diagnosed with oesophageal cancer in 2017 and received treatment and advice in Wrexham Maelor Hospital, one of the most difficult things to talk about was his finances.  He said:

“It might not be what people expect, but one of the first thoughts I had when I was told I had cancer was about my work.

“While my cancer diagnosis took me more than a little time to come to terms with, as a self-employed photographer the moment I heard that I might need to take 6 months off work for treatment sent me into an absolute panic.

“I guess its traditional that there’s this sense of stoicism when it some to talking openly about, or admitting money worries, but talking about it was one of the best things I did.  It helped me treat it like a business plan to start working out how I was going to get through this.

“It’s not easy.  Having to worry about cancer, your treatment and the horrible side-effects of chemotherapy at the same time you are trying to work out how to pay your bills is hard.

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“I think by opening up earlier, I avoided reaching any sort of crisis point.  I found support through Macmillan grants and advice services, and I worked out how I could tackle the issue head on and put a plan in place.  No-one in a similar position should feel like they can’t ask for advice and support.”

Health and social care professionals from across the UK are calling for an end of cancer side-effect taboos in a new video from Macmillan.

Julie Armytage is a Macmillan Counsellor based in Velindre Cancer Centre who specialises in helping people to manage the impact of cancer on their relationships.  She says:

“Trying to deal with a cancer diagnosis and treatment is one thing.  Trying to do so while feeling too embarrassed to talk about its wider physical, financial or emotional impacts is another altogether.

“It is heart-breaking that people with cancer, who are often at their most vulnerable, find it so hard to talk about subjects like sex and intimacy.  Especially at a time when it is so important for them to be able to express love, feel closeness, and have confidence and comfort in their relationships.

“Not speaking about ‘taboo’ subjects like sex and intimacy can have a huge impact on people’s emotional and mental well-being, and as a society we need to get better at opening up.

“Unless we do, we risk leaving people with cancer to struggle alone with serious physical or emotional issues – often when the help they so desperately need is just one conversation or phone call away.”

Sex and relationships are the number one taboo issues in Wales with 64% saying they’d find these issues difficult to talk about, and 52% saying they would struggle to even talk to their partner, close friends or family about them.

However, 39%% of people with cancer in Wales say the disease had a negative impact on their ability or desire to have sex, and 18% say the same for their relationship with their partner.  The poll shows that other prominent taboos in Wales were problems with bowels or bladder (51%), financial issues (55%) and feelings of sadness and depression (41%). All of which can occur as a result of a cancer diagnosis and treatment.

Richard Pugh, Head of Services for Macmillan Cancer Support in Wales, said:

“Cancer can turn your life upside down, and it can have a wide range of emotional, physical and financial impacts that people struggle to cope with.

“The findings of this poll show just how vital it is that our cancer care services can keep track of people’s individual needs right from the earliest stages of diagnosis – needs which are often far wider and far more complex than simply what happens in hospital.

“No-one should feel like they can’t talk about or seek support on the issues that are affecting them.   There should be no subject that is ‘taboo’, and people should feel confident to talk openly.

“They are not alone, and many of the impacts of cancer which people might find difficult to talk about are both treatable and manageable.  Thanks to the continued generosity of the Welsh public, Macmillan is here to help.”

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