09 Jan 2018 Other

Blood cancer and your emotions – an expert’s insight

Philip Alexander is a haemato-oncology counsellor and cognitive behaviour psychotherapist at King’s College Hospital in London, and one of four psychological therapists in the Leukaemia UK Mind & Body Team, which puts emotional wellbeing and support on a par with physical treatment. Here, he describes the key role counselling and talking therapy plays in blood cancer care

Why is emotional support particularly important for people affected by blood cancers?

Treatments like intensive chemotherapy can be aggressive, arguably more so than for some other forms of cancer. The side effects can be unpleasant, sometimes serious, and last for some time (e.g. fatigue).

Treatment often involves long hospital stays and separation from loved ones, which can lead to some people feeling isolated. A number of the patients I see have had a transplant, which is very challenging – both physically and psychologically – and it can take some time for people to recover from that.

What is counselling?

Counselling is a form of talking therapy and the term is often used interchangeably with the word ‘psychotherapy’. As with all talking therapies, it is an opportunity for someone to express personal thoughts and feelings in a safe and confidential space with someone who is trained in emotional wellbeing and who will not judge them.

All talking therapies help people to address problems in living, and to reflect upon and work through their concerns. Some, like CBT [Cognitive Behavioural Therapy], help to improve specific and more severe psychological difficulties such as depression, anger and panic.

Typically, counselling in this setting is about supporting people to adjust and cope with their diagnosis, as well as to manage their emotions. It is important to say that even if people are very distressed at times they are probably not ‘clinically depressed’; their feelings are actually normal. I will let them know this because it is very important not to ‘pathologise’ someone’s distress if they are diagnosed with a blood cancer. This means they must not be made to feel that they are weak or mentally ill because they are worried and upset.

What’s the difference between ‘normal distress’ and clinical depression?

Being distressed, worried or sad in the face of a blood cancer diagnosis is not the same as being clinically depressed. These feelings are a normal response, and tend to ebb and flow. Depression is a more persistent set of feelings and symptoms that colour everything about your life, and don’t just relate to one specific problem. Symptoms include persistent low mood, hopelessness, worthlessness, loss of enjoyment in things you normally enjoy (even things like time with the family), and beliefs like everything’s futile and that you don’t have a future. This can stop you from functioning normally and enjoying life. Depressed people can feel suicidal, whereas our patients are usually very motivated to get well and to live.

Some people affected by blood cancer experience an emotional reaction at the point they’re feeling physically better. Why is this?

After diagnosis people tend to be quite focused on their treatment and hospital appointments, as well as juggling their family life and other commitments, too. Often, people become good at compartmentalising, or putting certain worries and feelings to the back of their minds. This can reduce, or even hide, distress. This can be a helpful strategy that allows them to focus on getting through treatment and to cope, without getting overwhelmed.

Even if concerns are compartmentalised and feelings are beneath the surface, there’s usually quite a bit of stress and anxiety around. This means people are in a state of fight or flight without realising it. This is a primitive state that helps us to cope with danger. The body releases a lot of adrenaline, which gives us energy (a bit like being on steroids) and helps us to focus on the problems we’re facing.

When treatment ends and things settle down, there’s often more time to reflect on what’s happened, and to think. The things that have been compartmentalised can surface. People often go over what has happened, or dwell on questions like why did they get the blood cancer in the first place. They will begin to think about what life will be like, going forward. As well as this, as the adrenaline goes down again people can feel exhausted, almost as though they’ve used up their supply.

Why do some people find it easier to talk to you, rather than their family and friends?

One of the main reasons is the neutrality and objectivity counsellors bring, together with the fact that we’re professionally trained to listen at a deep level and to empathise. We also understand when it’s OK to be gently challenging and get people to reflect on their thinking and behaviour. And we have expertise about emotional distress, and mental health problems like depression.

Although family members can be the best source of support for patients, often they start doling out advice or saying the wrong thing, like “I know how you feel” or “be positive”. This can be very invalidating, in other words it communicates to people that their feelings are not OK. Counsellors, through their listening, empathy and understanding, enable people to open up and express their innermost thoughts and feelings, perhaps things they’ve never expressed to anyone else. We have to work hard to create the space so they feel able to do that.

What can people affected by blood cancer do to keep mentally healthy?

Firstly, focus on self-compassion and self-empathy. Acknowledge that you’re going through a challenging life event and that your thoughts and feelings are entirely normal and valid. It’s ok to be you and it’s ok to be having these feelings in response to your illness. You’re not weak, you’re not stupid, you’re not crazy. Be as kind, considerate, understanding and compassionate towards yourself as you would towards a loved one in a similar situation. This is not the same as self-pity!

Secondly, watch your thinking. Many of your thoughts and worries in the face of a blood cancer diagnosis will be valid and should be considered with compassion. However, it is possible to dwell on worst case scenarios, ignore the facts, and generally over-think. This can be unhelpful, make distress worse, and even contribute to depression. It doesn’t mean you have to think positively all the time. This isn’t realistic when you have cancer, but dwelling on unhelpful thoughts and things in the future (e.g. “I know this treatment isn’t going to work”) will tend to have a negative impact on your mood. Try not to over-think, and try to achieve some objectivity and balance in what you think, i.e. focus on the current facts and information you’ve been given, rather than the worst case scenarios you are imagining.

Thirdly, engage in things you’re passionate about. Reflect on what it is in life that you truly value and care about. Then make a conscious effort to actually do more of these meaningful activities. If you’re ill and you’re physically limited, try to be creative and find a different way to do these things and remain connected to what you care about. If you do this and reduce over-thinking you will feel more alive and engaged with life, even if you’re in pain or ill.

And fourthly, be present. Whatever you’re doing, whether it’s a meaningful activity mentioned previously, a conversation with a friend or loved one, or even a chore, focus on that moment and bring your full attention and awareness to it. This is called ‘being present’. If you’re out walking somewhere, for example, really tune in to your environment; notice everything about it, all the detail, and make sure you’re not staring at your phone!

As well as the above points, ‘good stress hygiene’ always applies – try to eat regularly and nutritiously, do some gentle exercise, reduce caffeine and alcohol intake, and get sufficient sleep – research clearly demonstrates the importance of these factors in improving mood.

You’re a central part of Leukaemia UK’s Mind & Body Team at King’s. How do you feel about this?

It’s very exciting that the psychological care of our patients is being taken so seriously and that it’s going to be thoroughly embedded in the Institute of Haematology right from the outset.

Just as we always treat the physical symptoms of people with blood cancer, it is equally important to attend to their emotional needs too – wherever they might be on a continuum from mild and normal distress through to being mentally unwell. This is because we know that people with serious and/or long-term health conditions experience a number of emotional challenges in coping and adjusting, and that they could develop mental health issues as a result of their illness.

I think it’s brilliant the heads of our department are so interested in the emotional wellbeing of patients; there hasn’t always been such enthusiasm for holistic care in other places I’ve worked.

By increasing resources we can broaden the services and interventions we offer to patients and reach more people. Obviously, as a therapist I think this is amazing. The Mind & Body Team will be a comprehensive ‘psycho-oncology’ service, meaning it’ll have different talking therapists (psychotherapists, psychologists, specialist counsellors), a psychiatrist and a social worker, and it will include (or work closely with) occupational therapists, physiotherapists and dieticians.

This means it will focus on early interventions for the body as well as the mind. We’re all passionate about this kind of holistic care here, so it will be very exciting to see how it evolves.

What impact does good psychological support have on recovery?

I think rehabilitation following treatment for blood cancer includes both physical and psychological recovery, and it’s important that we support people in both aspects. As I’ve already mentioned, some people have a delayed emotional reaction, and might be confused or distressed by their feelings; as far as I’m concerned it’s vital that the door remains open for them to get support.

Things like depression and severe anxiety can affect the physical recovery of patients because of things like low levels of enjoyment and motivation, low energy, thoughts that things can never improve, and avoidance, etc. This, in turn, could hold people back from returning to employment or studying, or from engaging in satisfying and fulfilling things.

To my mind it’s good practice to ensure that we provide good, holistic care right the way through a patient’s journey.

Leukaemia UK funded the first service of its kind to offer dedicated counsellor and clinical psychologist support for haematological patients at King’s College Hospital in London. Through the Leukaemia UK Mind & Body Team, people affected by blood cancer will routinely receive psychological support where needed. It is hoped that by making emotional support an integral part of everyone’s treatment, psychological problems may be identified early or even avoided altogether. Leukaemia UK hopes to fund more services like these across the UK.