For some people, MPNs have a minimal impact on their everyday lives. For others, MPNs can cause daily and debilitating symptoms that are difficult to manage and cope with. For the latter, living with a chronic disease throws up numerous challenges and obstacles that can make life, work, and social activities more of a struggle.
In my experience, symptoms are often random and unpredictable, appearing with little or no forewarning. This means there are good days and bad days, spells where you might feel fine and well, and other periods where you might feel really unwell and crippled by energy-sapping symptoms.
The fact that MPNs are to some extent ‘invisible diseases’ makes this turbulence all the more challenging. To outsiders, you may look perfectly ‘normal’, but on the inside, you might be experiencing an array of different symptoms such as itching, dizziness, bad headaches, visual disturbances, or paralysing fatigue.
I’ve heard some patients describe fatigue, which is one of the most common symptoms of an MPN, as like hitting a brick wall or running out of petrol – with no way of knowing when you wake up in the morning whether you’ll have a full tank or need a pitstop to refuel.
I can remember one instance of walking happily round a museum with a friend and suddenly having to make a beeline for the nearest bench, my legs feeling like they weighed three times their usual weight. Or another afternoon on the golf course where I had to suddenly stop and sit down, in the middle of the fairway, as I physically couldn’t walk another step.
I’m sure you have similar memories and experiences too, which is why keeping a diary, or an informal log of symptoms, can be so valuable for consultants. They might only see us on a ‘good day’, giving a false or skewed impression of what it’s really like to live with an MPN. Diaries are a great way of peeling back the curtain and keeping a useful record of symptom patterns and potential triggers.
Navigating these choppy waters inevitably has an impact on our mental health and wellbeing, which is the focus of this month’s blog entry.
I’ve written previously about the summer of 2020 in the pandemic when I started to experience neuropathic pain. At the time, I was incredibly fortunate to have access to the Teenage and Young Adult (TYA) clinic and their psychology service at Guy’s Hospital. I was put in touch with a psychologist who used to be part of the TYA team and taught me Acceptance Commitment Therapy (ACT) as a way of managing chronic pain.
I still draw today on our conversations and the skills he taught me, sometimes on a daily or even minute-by-minute basis. This might seem strange to those who are largely asymptomatic. But to those who know what it’s like to have frequent symptoms, live with chronic pain or face future uncertainty, then the constant effort to be mindful and present will, I’m sure, resonate and be very familiar.
Before introducing this month’s wonderful guest and delving into our Q&A, I wanted to share my ‘top three’ exercises in the hope they might help you or someone you know now or in the future.
Mindfulness – aim to be present and in the moment. This can be split into two exercises you could try. First, Intentional Meditative Practice. In other words, something you sit down and intentionally practice in a designated session:
Set aside 5 minutes and sit in a comfortable chair. Close your eyes and notice your breathing. Feel your feet flat on the floor and the sensation of your back and legs touching the chair. Take a minute to scan your body and notice how it feels – are there any aches or pains, knots or tension? If there are, breathe into those places, focusing your attention on them, breathing in and out, slowly and intentionally. Acknowledge thoughts that inevitably come in and out of your mind. Don’t push them away or admonish yourself for your mind drifting. Just notice these thoughts coming in and out like clouds and draw your attention back to your breath. Over time, begin to feel your centre of consciousness shift from your mind – and the busyness of your thoughts there – into your body, from the tips of your fingers down to the ends of your toes. When you feel ready, open your eyes and take a moment to acknowledge your surroundings. Take care not to stand up too quickly. Notice a sense of calm and restfulness after finishing the session.
Second, Mindfulness in Everyday Life. In other words, something you can try when you’re out and about, and on the move:
For example, when outside on a walk, notice the sound of birdsong or the colour of the trees and plants around you. Notice whether you’re fully taking in your surroundings or are consumed by thoughts. When drinking tea or coffee, notice the weight of the mug in your hand, the shape of its handle, and the temperature of its surface. Bring your attention into the present moment and take time to acknowledge the textures, feelings, sensations, touches, and tastes of everyday life. This can be particularly helpful when you’re in pain or experiencing a difficult day symptom-wise. Just expanding your attention away from the locus of pain to the feel of your feet against the floor or the warmth of a mug of tea in your hand is an achievement and can make a difference. You are no longer wrestling with the pain or in a tug of war with a particular emotion. This is not to say the pain is no longer there; rather you acknowledge its presence but expand your attention beyond it.
The Bus Analogy – aim to rethink how you make sense of MPN symptoms.
Imagine yourself as a bus weaving its way down a country lane. You are in the driving seat. Passengers (like pain, tiredness, or anxiety) can hop onto your bus and make it more difficult on a given day to drive along your chosen route. Perhaps they’re noisy and distracting, trying to take your attention away from the road in front of you. Maybe you’ll have to pull over and stop, acknowledge their presence on the bus today and take time to recuperate. However, those disruptive passengers can also hop off your bus. They are not permanent fixtures or part of the infrastructure of your bus. Every day, if you notice particular rituals of thinking (such as worrying whether a symptom will be there tomorrow or the day after that), think in terms of bus passengers. They do not define you and they can disembark just as easily as they can flag you down for a ride.
The Jury Analogy – aim to counter irrational, spiralling, or catastrophising thoughts which may arise when experiencing debilitating symptoms, facing big questions like when to start treatment, or thinking about what the future might hold.
When you’re in pain or facing a difficult situation, it is natural to imagine the worst. That the pain will never end and there’s no solution to turn it off. Or that everything bad that could happen, will in fact unfold. You might think about this thought process in terms of a dark alley: picture yourself walking down a street at night and a man crossing the road to start walking behind you. What’s going through your mind? Perhaps that he’s threatening, that you’re on your own, that no-one’s at home, that your phone battery is out of charge…
It is a natural human instinct to perceive a potential threat and start thinking through possible scenarios. In fact, we are pre-programmed to think in this way given our ancestry as hunter gatherers, always on the lookout for threats to our survival. It is important to recognise, however, that they’re emotionally charged instincts. They represent a chain of emotional reasoning.
The jury analogy offers a way of recognising this emotional reasoning and turning instead to hard evidence. Think about your scenario in terms of a court case – if your pain was in the dock charged with never ending and the evidence given to the jury in support of this charge was, ‘that’s what I fear will happen’, what would the judge ruling on the case say? They are likely to say there is no hard evidence to suggest it will never end. It is a hypothesis based on a ‘hunch’ and emotion. The judge would advocate revisiting past experiences and looking at the evidence. Have you always been in pain? No. Did your team of doctors prescribe medication to treat the pain? Yes. Are they likely to do so again? Yes. Will they leave you to suffer in silence? No. This exercise is a way of rethinking a particular experience, mitigating against a chain of worries, and stopping irrational, but very natural and understandable, thoughts.
These are just three of the techniques and exercises that I learnt and find helpful. There are many more which are equally valuable, such as mindful, imaginative exercises around our values and what is most meaningful and important to us. Or the ‘three spheres’ model, which encourages us to recognise when we’re in ‘threat mode’ (fearful, anxious, or stressed), ‘drive mode’ (doing an activity like work, sport, or social interaction) or ‘soothing mode’(engaged in something restorative, relaxing, or enjoyable); and crucially, to notice when one sphere becomes too dominant or absent, and we need to shift from one to another.
Although medicine is divided up into myriad specialisms, roles, and departments that treat different parts of our bodies, it is vital to recognise that we are ultimately a single, whole person, where mind and body are largely indivisible.
If one aspect of us is out of kilter, it’s likely other parts of us are too.
Having psychological techniques and tools at our disposal is therefore invaluable for helping us along our patient journeys and it is for this reason I am delighted to be joined by Dr Sophia Kaimaklioti, Psychologist and Psychotherapist in the TYA service and Psycho-Oncology Support Team at Guy’s Hospital. I really hope you enjoy our Q&A together.
A: Hello Dr Kaimaklioti – thank you so much for taking the time to answer this Q&A for our young patient blog. It’s very much appreciated. Firstly, could you briefly describe your role and your work within the TYA clinic at Guy’s Hospital?
S: Hi Alice. I am one of the TYA Psychologists and in my role I work with young people with a diagnosis of cancer and brain tumours. TYA Psychology is currently looking into expanding the service to families as a diagnosis of cancer also affects family members and significant others (for example, parents, siblings, partners, carers, friends). We offer support to people throughout diagnosis, treatment and beyond.
A: Why is psychological support so important for young patients under your care?
S: Our young patients are at a unique stage in their lives as they are transitioning into adulthood, and they are discovering who they are. They are going through a lot of developmental changes that affect both their bodies and minds. A cancer diagnosis disrupts all that, life pauses, and they find themselves having to confront issues around their diagnosis and treatment. Meanwhile, life around them goes on, their friends carry on following their dreams, and our TYAs often feel left behind and stuck having to tackle the physical and emotional impact of cancer. Being a young person with cancer can be a lonely and isolating experience and psychological therapy can help addressing all these issues.
A: What are the different therapies you offer to patients?
S: The psychologists in our team are trained in a number of modalities, for example, Acceptance and Commitment Therapy (ACT), Cognitive Behavioural Therapy (CBT), Dynamic Integrative Therapy (DIT), Attachment Narrative Therapy (ANT), Systemic Therapy and Integrative Psychotherapy.
A: As I mentioned previously, the psychologist I saw was instrumental in helping me during a very difficult period of chronic pain through Acceptance Commitment Therapy (ACT). Are you able to describe this and the principles underpinning it?
S: I will try my best to answer this question Alice. My understanding is that ACT aims to help us create a rich and meaningful life while accepting that our life journey will be full of setbacks and challenges. At its core ACT is a behavioural therapy that encourages us to take action, to befriend unwanted thoughts and feelings and to engage with values-guided action and mindful action.
A: As I’ve detailed above, I found – and still find – the ‘mindfulness’ techniques really helpful. Could you briefly describe them and how readers might practice one technique on their own?
S: ACT is a powerful mindfulness-based therapy, and it gives us a vast range of tools to learn mindfulness skills. In lay terms mindfulness is a mental state of awareness, focus and openness, which allows us to engage fully in what we are doing at any moment. ACT breaks mindfulness skills down into 3 categories:
- Defusion: distancing from, and letting go of, unhelpful thoughts, beliefs and memories
- Acceptance: making room for painful feelings, urges and sensations, and allowing them to come and go without a struggle and
- Contact with the present moment: engaging fully with your here-and-now experience, with an attitude of openness and curiosity.
There are three basic steps that we need to follow in order to experience mindfulness effectively:
a) pause for a moment
b) fix attention on breath and/or body posture
c) observe- with openness, interest and receptiveness – whatever thoughts, feelings, or other private experiences are present.
In a car we can drive for miles on ‘automatic pilot’ without really being aware of what we are doing. Similarly we may not be really present, moment-by-moment, for most of our lives, we can often be ‘miles away’ without knowing it. For example, if we wash the dishes each evening, we might tend to be ‘in our heads’ as we’re washing up, thinking about what we have to do, what we’ve done earlier in the day or worrying about future events. But let’s try and make this mundane every day activity a mindful activity for your readers. So next time we wash the dishes we can try to notice the temperature of the water and how it feels on the skin, the sounds of the water as we take out and put dishes into the water. The smoothness of the plates, and the texture of the sponge. Just noticing what we might not normally notice. It is important to also notice our breathing. Thoughts will continuously intrude, but we can just notice them, and then bring our attention back to washing the dishes. The more we practice, perhaps the more (initially at least) we will notice those thoughts intruding, and that’s ok. The only aim of mindful activity is to bring our attention back to the activity continually, noticing those sensations, from outside and within us.
A: Similarly, my psychologist’s advice and guidance around ‘values’ was – and remains – very meaningful for me. Again, could you define what this is and why it’s important?
S: As I mentioned earlier ACT encourages us to take values-guided action and in order to do that we identify one’s core values first and we then use them to guide, motivate and inspire behavioural change. And what helps us to get in touch with our core values is engaging with questions like: What do you want to stand for in life? What really matters, deep in your heart? What sort of person do you want to be? What sort of relationships do you want to build? How do you want to act/behave in the world/towards others/towards yourself? What do you want to do with your life? There is an existential component in ACT and values describe how we want to behave on an ongoing basis, and just like a compass they give us direction and guide in how to create a meaningful life.
A: My psychologist used lots of brilliant analogies with me as a way of explaining techniques and working through particular emotions, behaviours, and circumstances. This included the bus journey analogy whereby passengers (like pain or fatigue) can hop on – and off – your vehicle on any given day. Why are analogies important and how can they help young patients in particular?
S: The use of metaphors in ACT is instrumental in facilitating therapeutic change. ACT is based on the idea that pain in life is inevitable and instead of fighting inevitable pain, acceptance strategies can help us feel more settled in ourselves and more detached from the intensity of pain. In our work with young adults with cancer, metaphors play a vital role and we use metaphorical visualisations, like the passengers on the bus, to help our TYAs to learn to take a step back and instead of getting caught up in their thoughts or being pushed around by them, they let them come and go as if there were passengers on a bus or cars driving past outside their house. Metaphors are important because they help young people to learn how to step back and watch their thinking instead of getting tangled up in it.
A: MPNs, which are a rare type of blood cancer, are not usually diagnosed in young people, but are more typically found in older age groups. This can be particularly difficult for young patients to rationalise and understand. How might you help a young patient come to terms with their diagnosis? For instance, what kind of conversation would you have with them?
S: It is usually very overwhelming for young people to grapple with a diagnosis of MPN, as they do not only have to manage difficult symptoms on a daily basis, or find ways to make sense of the fact that they have been diagnosed with a cancer that is more typically found in older age groups and not usually diagnosed in young people, but also they have to find a way to manage the fact that their condition will be controlled but not cured. Different individuals with MPNs may bring up a range of emotional problems and I am always led by the person’s presenting difficulties and their therapy goals. In my work I always encourage my MPN patients to talk about confusing and conflicting feelings about their condition. Young MPN patients do not look like a cancer patient, and this often gives rise to strong beliefs that they shouldn’t be upset or vulnerable and in most cases upsetting feelings and thoughts are pushed away. But as we know, resisting reality and ignoring one’s issues is like pushing a beach ball into water and it always pops up when you let go. In other words, we can only suppress our thoughts and feelings for so long. So I always bear this in mind and if it feels relevant to the person’s story I encourage a conversation about it.
A: Are there any additional techniques you might recommend for young patients living with a chronic disease like an MPN?
S: I think that it is important to emphasize that no one should suffer in silence; if you are struggling emotionally please reach out to your loved ones, your friends, make use of Alice’s blog. Make contact with your hospital team, a phone call or an email requesting psychological support, if you are a patient at Guy’s Hospital, is what it takes for one of us to get in touch with you.
Also, I would like to say that paying attention to emotional acceptance is very important. Here are some quick steps to emotional acceptance:
- OBSERVE. Bring awareness, pay attention, to the feelings in your body.
- BREATHE. Take a few deep breaths. Breathe into and around them.
- EXPAND. Make room for these feelings. Create some space for them.
- ALLOW. Allow them to be there, you don’t have to like them, want them or approve of them. Stop fighting them and wasting your energy on pushing them away; allow them to be there simply because they already are. Some people find it helpful to silently say to themselves, ‘I don’t like this feeling, but I have room for it,’ or ‘it’s unpleasant, but I can accept it.’
A: Are there any books, podcasts, apps or online resources you could recommend for any young patients interested in following up on your answers and finding out more?
S: No specific books or apps come to mind but there is plenty of information about ACT on the web. Also, I would like to say that your blog, in my opinion, is an invaluable source of support for young people with MPN. Lastly I want to thank you for giving me the opportunity to contribute.
A huge thank you to Dr Sophia Kaimaklioti for taking the time to answer this Q&A and sharing her thoughts and expertise. If you’d like to get in touch with Alice about this topic or any of the ideas or experiences raised in her previous blog posts, you can contact her by email at: firstname.lastname@example.org
‘The Happiness Trap’ by Russ Harris.
‘The Compassionate Mind Workbook’ by Chris Irons and Elaine Beaumont.