Blood cancer: supporting mind and body
Surabhi Chaturvedi, Psychotherapist at King’s College Hospital NHS Foundation Trust’s Haematology Department, blogs about the emotional impact of being diagnosed with a blood cancer and the importance of supporting people’s mental wellbeing throughout the course of their illness.
Although all serious health conditions have a psychological impact, blood cancers present some specific challenges. Some of the treatments (such as Bone Marrow Transplants) are intensive and involve repeated hospital admissions and physical isolation due to risks of infection. Disruptions to life in the form of fatigue or graft versus host disease (GvHD, a condition where the donated bone marrow mistakes the person’s body as ‘foreign’ and attacks the host’s cells) can continue after treatment comes to an end. Lack of awareness can occasionally translate into a lack of understanding from caregivers or colleagues. Using Blood Cancer Awareness Month as an opportunity to raise public awareness is one way of making the experience of these illnesses less isolating.
Helping patients cope emotionally
There is no fixed ‘template’ for coping with blood cancer that can be applied to all patients. Each individual’s response is a complex interplay of factors related to their illness (prognosis and treatment options) and personal/social factors (levels of practical and social support, previous experience of stressors, personality traits, and their existential or spiritual beliefs i.e. their thoughts about the meaning of life). Similarly, patient support needs don’t follow a specific timeline. Some people need support during the initial stages following diagnosis and others require support after the end of treatment.
Among a variety of emotions, a sense of loss can pervade the patient’s experience. Although none of us has any guarantees about our futures, our natural human tendency is to have aspirations and make plans for the future. To an extent this sense of safety is necessary to participate in life and it can feel out-of-reach to someone diagnosed with a serious illness. With time, there may be a shift in this feeling but it is important to understand that this loss is felt very acutely by many people.
Patients often describe their journey as an ‘emotional rollercoaster’. This metaphor feels accurate to describe the multiple physical and emotional adjustments patients (and carers) have to make. At the same time as processing thoughts and feelings associated with the diagnosis, patients have to face the practicalities of illness, including further investigations or treatment. The changes caused by side effects of treatment often have a profound effect on people’s sense of self or identity, and the personal and professional roles in which they have always viewed themselves. Keeping friends and family informed can also be emotionally demanding. Amidst all this, the picture of coping with a blood cancer can also include more positive emotions such as hope, or of gratitude towards loved ones and professionals.
Distinguishing emotional distress from mental illness
Like any of us, people diagnosed with blood cancers can suffer from mental health issues such as depression or anxiety. However, viewing the process of adjustment through the lens of a mental illness isn’t always helpful because it can lead us to pathologise (treating something as psychologically abnormal) normal and valid emotional states. In a cancer setting, patients (and carers) can experience complex and extreme distress that doesn’t always coincide with diagnostic criteria for mental illness. Moreover, people can appear ‘fine’ on the outside, but still benefit from therapy in order to process their experience of cancer and overcome significant barriers to psychological wellbeing. It is important to distinguish emotional distress from mental illness, and to offer support for both.
At the heart of psychological therapy is the ‘therapeutic relationship’ – a relationship based on trust, safety, respect, empathy and compassion. Research has shown that this relationship is just as important as the specific techniques or methods used by a therapist.
The role of psychotherapy in a cancer setting
Patients often wish to protect loved ones from pain and discomfort, and vice versa. Counselling and psychotherapy offer people a safe space in which to vent difficult emotions, speak openly about fears and worries or talk about the impact of side effects without worrying that they will upset someone or be judged.
A psychological therapist’s role in cancer settings is varied. It includes journeying alongside patients as they navigate the highs and the lows, and bearing witness to inevitable aspects of illness and treatment. We help patients identify specific psychological traits (thoughts or behaviours) that have unhelpful consequences (e.g. increased distress) but can be changed through insight and coping strategies. We support patients to retain or regain a sense of agency amidst helplessness and vulnerability. We are also trained to assess and help patients overcome depression, anxiety, post-traumatic stress or other mental health issues in addition to coping with cancer.
Mark, a male patient in his 40’s, was diagnosed with a blood cancer requiring a ‘watch-and-wait’ approach. His disease was not severe enough to require treatment, but his life was suddenly thrown into the shadow cast by the threat of cancer. Mark had suffered from anxiety in the past and the diagnosis re-triggered this. He found himself sleepless and preoccupied by thoughts about his deterioration and his death. Similar to other patients in his circumstances, this was mixed with feelings of confusion about ‘how to feel’. Therapy was helpful not only to treat Mark’s anxiety through coping strategies to regulate his emotions and de-escalate catastrophic negative thoughts, but also to learn to live with uncertainty. A year later, Mark did progress and had to undergo a stem cell transplant. He sought psychological support once more to cope with his six-week hospital admission when he suffered multiple physical symptoms. For now, Mark remains well and disease-free.
Just as there is no set time when psychological support is needed, there is no a set time when psychological support should be withdrawn.
Anne, a woman in her 70’s, was diagnosed with a type of leukaemia. We saw each other regularly for counselling over a five-month period. At the start of our work Anne utilised the counselling to come to terms with her diagnosis and what it meant for her and family. Through treatment she wanted to recover a sense of ‘normal’ life as she struggled with side effects. Sadly, Anne’s disease was aggressive and stopped responding to treatment. However, Anne and I continued to meet each other until a few days prior to her death. At this most difficult of times, therapy offered Anne a chance to look at her life and legacy, and work through the agitation she felt about past regrets and about loved ones she was going to leave behind.
As psychological therapists embedded within the Haematology department, we are in a privileged position to offer a highly responsive and accessible service to patients and families. An understanding of blood cancers and their treatments is an added advantage to meet the psychological needs of our patients. Patients and caregivers can self-refer for counselling or are referred by doctors and nurses. We also try to introduce ourselves to patients and families informally, by visiting Haematology wards or outpatient clinics.
We don’t set a limit on the number of sessions people can have and prefer to discuss this with patients in a collaborative manner. Some people benefit from seeing a therapist just once or twice, and others benefit from longer-term therapy that lasts for months. Adjustment is an ongoing process. As circumstances change, for better or worse, so do demands on patients to adapt. We believe in operating an open-door policy where psychological support is accessible when it is needed, and as many times as needed. Finally, our close working relationships with doctors and nurses are invaluable. In addition to supporting patients and caregivers, we support colleagues to gain a psychological insight into patients. This teamwork is crucial in order to support the whole person while we treat the disease.
The King’s Health Partners Haematology Institute is aiming to bring together our strengths in clinical service, research, and education to deliver exceptional outcomes for haematology patients.
Read more about how we’re revolutionising blood cancer care by offering integrated physical and mental healthcare to people living with blood cancer.