A LOVED ON I DO

Advanced cancer is a diagnosis no-one wants – and telling someone you love that you have it can be as difficult as hearing about it for the first time yourself. FIONA DUFFY learns why good communication is vital when there is bad news to be shared

ANCER has become increasingly common, with one in two of us now likely to receive a diagnosis at some time in our lives. When cancer becomes advanced, however, life becomes more difficult – both for the patient and their loved ones.According to Macmillan Cancer Support, three-quarters of those living with advanced cancer feel they aren’t getting the support they need.

Now the Advanced Cancers Coalition has published a guide which aims to help provide answers to some of life’s most difficult questions.

Here, Dr Helen Bulbeck, founder of the charity Brainstrust, and Dr Mary Burgess, a lead consultant clinical psychologist who both helped create the guide, offer their best tips for coping when the worst happens.

“We all hear information differently and our understanding depends on many factors: when and how it is given, who is giving it, and what we wish to hear,” says Dr Burgess.

“Decide what you want to get out of each meeting.What questions would you like to ask and what information do you want to receive? Set an agenda and have someone who can keep you on track and take notes so you can go over them afterwards.”

Alternatively, suggest a postmeeting debrief, suggests Dr Bulbeck. “When my daughter was having treatment for a brain tumour we would write down what we thought had been said then compare notes to make sure we’d heard the same thing.

“If there is a misunderstanding your consultant will clarify it.”

“This is a very individual decision and it’s when you are ready,” says Dr Burgess. “Often, people find the effort it takes keeping quiet can be exhausting and overtake the benefit of not saying anything. That’s often the tipping point.

“People may want to wait until they know more or have a plan but we communicate in lots of ways – not just verbally. Loved ones might pick up on things and notice you’re tired or going to hospital a lot.Youngsters, in particular, will usually know that something is up.

“You don’t have to tell all the details – just what you feel happy to in your own time.

“Ensure that you are ok and clear with information before speaking to others. Cancer care teams can help with this.”

“Avoidance or denial is a normal response in advanced cancer,” says Dr Bulbeck. “In fact, denial is an important coping mechanism for some as it allows time to process distressing information.

“However, continued avoidance usually increases our fear and can leave us feeling stuck and increasingly isolated. Fear – for instance, of the unknown or upsetting loved ones – can also prevent us from being open.”

Dr Burgess adds: “It’s helpful to ask: ‘How are we going to do this?’ “Before meetings, discuss how honest you’d like the consultant to be, what questions you’re prepared to ask, is there information you don’t want to know and should one of you leave the room while the other asks ‘uncomfortable’ questions? If you can’t resolve things, ask to speak to someone on your cancer care team and just say, ‘We’re struggling a bit’.”

“When there is an uncertain future it’s really helpful to establish what and who is important in life,” says Dr Burgess.

“There’s a duality – it might not be a good prognosis but there is a lot of living to do.And the only way you can begin to do that is having those conversations with yourself and others.”

Have a discussion about values – what’s important, how they want to spend the time they have and what they don’t want to regret, agrees Dr Bulbeck.

“Then when you’re faced with a hard decision, or feeling conflicted, just go back to your values.”

“Managing expectations is one of the hardest areas,” says Dr

“IF YOU don’t know what to say, a that,” says Dr Burgess. “Tell them what to say but I am here to supp

“Remember, they are more than diagnosis. Your relationship with been prior to the diagnosis so rem that. You could say, ‘You’re a grea want to help’. Remember them as pre-cancer.

“Fundamentally, they are the sa

Bulbeck. “The carer often feels a duty to make sure they have left no stone unturned or be a white knight on a charger who can sort everything.They, and other loved ones, may find it harder to accept, ‘This is life limiting and we are entering a phase where treatment options have run out’.

“In reality, often the patient just wants to get on with life and have their best possible day.”

Denial and frantic searches for “miracle cures” can reveal a lack of understanding about the complexity of the diagnosis, says Dr Bulbeck.

“As a caregiver I would say: ‘Treatment options have run out, we are looking, now, at best