Cancer has become increasingly common, with one in two of us now likely to receive a diagnosis at some time in our lives. When it becomes advanced, however, life becomes more difficult – both for the patient and loved ones.
Macmillan Cancer Support says 75% of people living with the later stages of the disease feel they aren’t getting the support they need.
Now the Advanced Cancers Coalition, a group of a dozen charities, has published a guide which aims to help provide answers to some of life’s most difficult questions.
Dr Helen Bulbeck, founder of brain tumour charity Brainstrust, and Dr Mary Burgess, a lead consultant clinical psychologist, both helped create the guide.
Here they offer their top tips for coping when given the dreaded diagnosis.
What did the doctor say again?
“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 beforehand what you want to get out of each meeting with doctors. What questions would you like to ask and what information do you want to receive?”
“You should have someone with you who can keep you on track and take notes so you can go over them afterwards.” Alternatively, a good move would be to suggest a post-meeting debrief, Dr Bulbeck suggests.
“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,” she says. “If there is a misunderstanding your consultant won’t mind clarifying.”
When should we let loved ones know?
“This is a very individual decision and it’s really 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 something is up. You don’t have to tell all the details – just what you feel happy to in your own time.
“Ensure you are OK and clear about information before speaking to others. Again, cancer care teams can help.”
One of us is in denial
“Denial is a normal response in advanced cancer,” says Dr Bulbeck. “In fact, it is an important coping mechanism for some as it allows time to process distressing information. However, continued denial 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 stop 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, and 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’.”
What does (and doesn’t) matter?
“When there is an uncertain future, it’s really helpful to establish what and who is important in life,” says Dr Burgess.
“It might not be a good prognosis but there is a lot of living to do. And the only way you can to do that is having those conversations with yourself and others.”
Have a discussion about values – what’s important, how you want to spend the time you have left and what you 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.”
There must be something else we can try?
“Managing expectations is one of the hardest areas,” says Dr Bulbeck. “Carers often feel a duty to make sure no stone is 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’.
“Whereas, 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 care-giver I would say: ‘Treatment options have run out. We are looking, now, at best-supported care to make the most of the time we have’.
“It’s unhelpful to keep suggesting that we are not at that point – it stops us moving forward.”
You could then turn things around by asking: “What can I do to help as you are obviously finding this situation difficult?”
Emotions are running riot
“Don’t take emotion personally,” advises Dr Bulbeck. “If someone is reacting badly they are railing against the situation they are in – not the messenger. Use strategies to acknowledge you are listening and help the patient channel their emotions. You could ask a simple question using the word ‘specifically’ – for instance: ‘I notice you’re upset/angry/scared – what specifically are you upset/angry/scared about?’
“Practical measures also help. The first thing I say to someone in distress is ‘lift your head’ – because that gets oxygen into the blood.
“I encourage them to breathe in for the count of four and out for four then suggest moving to a new environment. Even looking out of the window can help.
“Also, remember heightened states of emotion don’t last for long. Reassure them, ‘this will pass. There will come a moment, very shortly, when you start to feel better.’
Communicate in a non-judgmental way – and ‘own’ your feelings. So instead of asking ‘Why are you being so distant?’, you could say ‘you seem preoccupied and I am worried about it’.
If well-meaning loved ones keep ringing/dropping by, take action.
“Being inundated immediately after a scan, test results or consultation is difficult,” says Dr Bulbeck. “Elect a spokesperson to manage communications and keep loved ones updated.
“One woman I was supporting spent so much time making tea that she felt like a waitress,” she adds. “She wanted to be with her husband – not in the kitchen while visitors got to spend time with him.
“Consider setting boundaries and avoiding open access. Maybe have a handful of people to come and go but everyone else should arrange visits in advance.
“Remember, you are not alone – and help and support is out there,” says Dr Bulbeck.