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The emotional impact of a blood cancer diagnosis can often be just as difficult, if not more difficult to cope with, than the physical aspects of the disease.
Leukaemia patients may face different emotional challenges depending on their specific diagnosis, as well as their personal circumstances. This might be an acute patient dealing with an aggressive illness and invasive treatments, or a chronic patient living with the knowledge they have an incurable disease.
In 2017, Leukaemia Care conducted a patient survey, part of which aimed to help identify the differences in psychological needs between blood cancer patients, so that we can tailor the care we provide to each individual. The survey revealed that particular groups of patients are more likely to report a negative emotional impact, such as chronic patients on ‘watch and wait’, patients who have relapsed, or those who are living with young children that are dependent on their care.
In this blog, we take a look at some of the groups that are most at need of emotional support and how we can help.
Most patients diagnosed with chronic lymphocytic leukaemia (CLL), and some people with myelodysplastic syndrome (MDS), do not need treating immediately. These patients will start the ‘watch and wait’ process (also known as active monitoring) whereby the progression of their leukaemia will be closely tracked with regular blood tests, until the level of leukaemic white blood cells reaches a point that needs treating. Treatment before this stage may cause greater harm for patients than the CLL would itself.
However, the phrase ‘watch and wait’ is too often referred to by patients as ‘watch and worry’ because it can cause a great deal of apprehension or fear in patients that haven’t been given enough information about their diagnosis.
“Hearing the word leukaemia was such a shock. He then went on to say that I would be put on ‘watch and wait’ and we were dismissed.”
“I didn’t like the fact that I could not find out WHEN it would affect me, or develop. I still feel like it is a silent timebomb waiting to blow up.”
Our survey revealed that half of the patients put on to ‘watch and wait’ feel more concerned and uneasy after their diagnosis, with 12.5% of patients feeling constantly depressed or anxious.
Interestingly, CLL patients that started treatment straight away (as opposed to waiting for treatment) were significantly more likely to say they have felt positive since their diagnosis or experienced no change in their emotional wellbeing. This suggests that the idea of ‘living with the unknown’ during ‘watch and wait’ is responsible for a large amount of emotional harm in leukaemia patients. Our survey also revealed that a significant lack in provision of both information and support may be responsible for much of these negative emotions.
We launched the Watch Wait Worry campaign in April 2018 to raise awareness of these issues. Part of this included a guidance document for patients, Living Well with Watch and Wait. This guide uses the experience of CLL patients to provide you with helpful advice and point you towards the resources that can help you during your CLL journey.
Download Living Well with Watch and Wait’ here.
The fear that your leukaemia might return can play on the mind of many blood cancer patients that are in remission or are currently managing their disease at a safe level. Rather unsurprisingly, our patient survey showed that patients with any type of leukaemia who were experiencing a relapse were more likely to feel depressed or anxious.
When going through a relapse, it is likely that you will experience a repeat of many of the same feelings that you did when you were first diagnosed, such as shock, anger, fear, guilt or denial. A lot of people find this second diagnosis more upsetting than the first due to a sense of ‘loss of control’ over their disease and its treatment. Patients may also worry about having the physical and emotional strength to get through another round of tests and treatments.
However, after having gone through a relapse, some patients actually report that their previous experience with blood cancer better equipped them for further treatment. For example, an established knowledge of their particular blood cancer, the treatments and their side effects, as well as an existing relationship with doctors and other hospital staff can mean for reduced fear and anxiety during the second time around.
“That horrible big ‘R’ word – relapse – is never far from my mind. It’s never far away and rears its vile head whenever it feels like it.”
Being a parent whilst living with leukaemia can be extremely tiring, both physically and emotionally. You may struggle with coping to care for your family when you are unwell and may resent or even feel guilty about the fact you are missing time with your children whilst they are growing up.
In our patient survey, we discovered that leukaemia patients with dependent children were much less likely to report feeling more positive since their diagnosis (16% compared to 25%). As well as this, patients with children were more likely to report feeling depressed or anxious since their diagnosis (52% compared to 37%) and were twice as likely to feel constantly depressed.
“I struggled to support my youngest child emotionally. I didn’t want my children to be affected so I often pretended to feel better than I did. I’m a very independent person and I find it very difficult to ask for help. My biggest worry has been the thought of losing my independence and not being able to provide for my kids.”
Just because certain cohorts of people are missing from our survey doesn’t mean that there aren’t other personal situations or patient differences that can put you at a higher risk of negative emotional impact. For example, we are very aware that certain side effects of leukaemia or its treatment such as fatigue, hair loss, weight gain and lowered fertility can cause a great deal of emotional distress, as well as cause knock-on changes to your lifestyle and relationships.
“The treatment I had already received had damaged my ovaries and that was it. It’s not the end of the world, the doctor told me, but to me it was.”
To read the full Living with Leukaemia – 2017 patient survey, click here
How we can support you
Everyone manages their emotions differently, but sharing your thoughts and feelings with loved ones, your partner or your GP is often the best place to start.
If you need to talk to somebody impartial about your blood cancer, our helpline is available Monday – Friday on 08088 010 444, with a haematology nurse available on the line every weekday.
Many people also benefit from joining our support groups or online community to share their feelings with patients in the same situation.
Or sometimes professional help in the form of counselling is required if emotional problems are long lasting or are particularly disruptive. You can now apply for our new Ann Ashley Leukaemia Counselling Fund, providing access to private counselling services through the provision of grants. Find out more and apply here.