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Managing worry about delayed surgery and treatment

Coronavirus is affecting the care of every cleft patient who is waiting for surgery or treatment. Waiting for surgery and living through a global pandemic are both hugely stressful life events. Being told that your or your child's surgery or treatment has been may result in a whole array of different emotional responses. 

Typical feelings you may experience include:

  • Shock
  • Worry
  • Anxiety / panic
  • Fear
  • Low mood / sadness
  • Anger and frustration
  • Sleep disturbance
  • Relief

These are all entirely normal, natural responses to a situation which is uncertain, or feels out of your control.  The current epidemic has added an extra layer of uncertainty to the uncertainty you may already feel about your or your child's cleft treatment.

The human brain is wired for certainty and so when faced with the unknown, we might think "I just can't cope with not knowing" and assume a negative outcome. These thoughts make us feel anxious, so we try to reduce the uncertainty by worrying about it. Unfortunately, although we think worry helps us feel better, it doesn't solve the situation or change anything. It often just makes us feel worse as the brain spirals into more and more anxious thoughts.

The following strategies may help you to manage any difficult feelings you may be experiencing with the uncertainty around your or your child's surgery.

Useful coping strategies to help manage worries

Everyone will react differently to a delay in surgery but it is important to allow yourself time to process your feelings, which may be complex. 

Talk- Talk to your family or friends about how you are feeling.  Although they will not be able to directly help, being able to express your emotions to them and gaining support will be a great comfort.

Write- It can be helpful to write down your thoughts and feelings about the delayed surgery in a journal. This can help to get the worries out of your mind and may free it up so you can move on.

Circles of control- The most useful thing anyone can do in any type of crisis - Covid-related, cleft-related or otherwise - is to:focus on what's in your control.You can't control what happens in the future. You can't control surgery or Covid itself but you can controlwhat you do- here and now. This really matters and makes a difference to you and the people you live with. Focus on the things which are in your circle of control (for example, how you are spending each day) and try to let go of the things that are outside and you cannot control (e.g. the timing of your surgery). Spending time thinking or worrying about things you cannot change is wasted energy. Instead try to focus that energy on something positive. 

Worry Tree- one way of helping to notice what is in your control is to use a Worry Tree, as illustrated below.

Worry tree 2

Worry time- You might find it helps to allow yourself a set time each day to think about your worries for a specified length of time, e.g. 15 minutes. Outside of this time, make a note of the worry and set it aside until your worry time. This should leave the rest of your time free to focus on other things.

Think APPLES- this is a tried & trusted technique to help you tolerate tuncertainty.

  • Acknowledge- Notice & acknowledge the uncertainty as it comes to mind.
  • Pause - Don't react as you normally do.  Don't react at all.  Just pause, and breathe. 
  • Pull back - Tell yourself this is just worry talking & is not helpful or necessary. It is only a thought or feeling. Thoughts are not fact & you don't have to believe them.
  • Let go - of the thought/feeling. It will pass. Imagine it floating away in a bubble/cloud.
  • Explore - the present moment, because right now, all is well.  Notice your breath, the ground beneath you, what you see, hear, touch, smell. 
  • Shift your attention - on what you need to do, on what you were doing before you noticed the worry, or do something else, with your full attention.

Breathe- Learning some breathing techniques can be really helpful to reduce the physical symptoms of anxiety. Start by sitting or lying somewhere comfortable and peaceful. Breathe in through your nose to the count of 7. Breathe out through your nose to the count of 11.  Focus on the rise and fall of your stomach and the feel of the breath as it moves in and out. Practice this technique for 5-10 minutes per day to give you an essential tool to cope when you are feeling anxious.

Be mindful- Consider ways you can build mindfulness into your day-to-day life. Mindfulness means learning how to focus on the present moment. It can help you to feel more self-aware, and in control of your thoughts and feelings. It might mean taking time to notice the trees, flowers and plants in your garden or the park, or really focusing on the music you're listening to.

Stay positive- As difficult as it may be, trying to keep a positive mindset can make big a difference to your health before surgery, as well as the recovery. It might help to think of this time as an opportunity to prepare, so you're in the best place both physically and mentally when the operation is finally able to go ahead.

Stay active- Being active isn't just good for your physical health, it's also important for your mental wellbeing. Physical activity releases hormones that make you feel better and give you more energy. If you're able to get outside for a walk, jog or cycle, then do so (following government guidelines). If you're shielding for health reasons, there's still lots of things you can do at home to keep active, e.g. online workouts and virtual classes. Just making an effort to keep moving around your house or garden will help to keep you active.

Fresh air- Try to get some sunlight and fresh air as much as you can - even if this means standing outside your front door or sitting by an open window. This can really help with your mental health

Relax- Do something you enjoy and that gives you time away from stressful thoughts and worry - whether that's listening to music, having a bath, or doing something creative like colouring, or reading a book.

Switch off- Try to take time out from your phone, social media and news updates - particularly if this is adding to your anxiety in the current situation. However, it is important to stay connected to your friends and family if you can't see them face to face. Make plans to video chat or talk to loved ones on the phone, or stay in touch with emails and texts.

Keep a routine- It can help to keep as much of a routine as possible, including when you get up in the morning and what time you go to bed.  Think about how you can spend your time at home. Perhaps doing something you never normally have time for, e.g. reading, baking, jigsaws, DIY or playing a musical instrument.

Eat well- What you eat has an important effect on your mood. Try to eat small amounts regularly, choosing wholegrain carbohydrates that release energy slowly. This will help to keep sugar levels steady throughout the day giving you more energy and helping you to think more clearly. Avoid sugary foods and drinks that give you a sharp rise and fall in sugar levels, and make you feel low. Caffeine (in tea, coffee, cola & energy drinks) can also make you feel anxious and depressed and disturb your sleep.

Sleep well- Feeling worried and anxious can affect how well you sleep; but lack of sleep in turn can also make you feel low. Getting into a good sleep routine will help your mental health.

Be prepared- making sure you're prepared for the operation will help you to feel ready once it is able to be rescheduled. If you have any choices to make, such as what type of anaesthetic to have, you could use this additional time to review your options.

Stay informed- although the scheduling of your operation might be out of your hands, staying informed about your options and the surgery can help to give you a sense of control. Stay in touch with your team.

Final thought- Remember, the current situation will come to pass and your operation will be rearranged as soon as it's safe to do so. Remind yourself that although it is unfortunate, your health is not in any danger.

When to seek help

If you find yourself thinking about the surgery all the time, or it is causing you to lose sleep or feel distressed, please don't hesitate to call the Cleft Service and ask to speak to one of the psychologists. They will be happy to talk to you on the phone and offer support to help you manage this difficult time. You do not have to go through this alone.