Coping with limb reconstruction surgery work booklet

This resource is aimed at children aged 7 to 12 years old but may be found useful by anyone who is undergoing limb reconstruction surgery themselves or who knows somebody who is.

It can be used to help you look at how you feel about the surgery and give you some ideas to help you talk about your worries. It will look at how having limb reconstruction surgery can make you feel about yourself and other people. It will give you some ideas about how to manage discomfort and to help you sleep better. It will also give your family and friends some ideas about how they can help you.

There is no right or wrong way to use this resource. You can choose to look at it on your own, with your parent or carer, with a friend, with somebody from your medical team or with your psychologist. This booklet was made because so many children having limb reconstruction surgery have described the sorts of feelings, worries and questions that you may be having about your condition or limb reconstruction surgery.

This booklet belongs to:

Your name:

Your age:

You can draw a picture of yourself here:

What is limb reconstruction surgery?

Limb reconstruction surgery is a name we use to explain many operations d1 here at Sheffield Children’s Hospital. The operations are d1 mostly on legs but can also be on arms. Children come to the hospital because they have a problem with their leg or arm – this can be something that they were born with, or it can be something that has happened as a child gets older or after an accident. The operations d1 are to help children to use their arm or leg more easily.

There can be lots of reasons that some1 would need limb reconstruction surgery. It may be that their leg needs to be made straighter or longer, or that their arm is not moving very well and it means that it is difficult to eat or get dressed by themselves. Some children, who come to see the team at the hospital, have an operation using an external fixator (cage). The cages go on the outside of the leg or arm and are fixed to the b1s with wires or pins. The cages can be on the arm or leg for quite a while until it has d1 its job and the b1s are healed and strong.

Write down here any questions you have about your condition or surgery:

Having limb reconstruction surgery does not just affect your body – it can also affect how you feel on the inside and how you act. It can affect your feelings, your thoughts and your behaviour.

My feelings

Here are some of the things children having limb reconstruction surgery might be feeling:

Can you think of any other feelings you have about your condition or operation?

My thoughts

Our feelings are linked to how we think about other people, the world and ourselves. Here are some thoughts that children going through limb reconstruction surgery might have:

Can you think of any other thoughts you have about your condition or operation?

My behaviour

When we do not feel good about ourselves and we think negative thoughts like those just menti1d, it can show in our behaviour. Here are a few examples of behaviours that can link to unhappy feelings and thoughts:

Can you think of any behaviour, which you might show that links to how you feel and think about your condition or operation?

My bag of feelings

Some children find it useful to make a Bag of Feelings about their condition or operation.

In the bag, you could write down or draw any feelings you have about your condition or operation. Remember, there are no right or wrong answers, it is your Bag of Feelings and you decide what goes in it.

You could then put in 3 wishes you could make. These can be about your condition or operation or anything at all. Remember this is your bag!

Your toolkit of ideas to help you

In this section we are going to look at ideas that can help you. We will develop a toolkit of ideas. We call it a toolkit because you will have different tools to use at different times. We will look at the people and things that help you manage your condition and your limb reconstruction surgery. We will also look at how relaxing and using your imagination can help you to relax and get a good night’s sleep.

The tug of war

Sometimes, living with a health condition or recovering after an operation can feel a bit like having a tug of war.

There will be some things that make your condition or recovery feel worse and harder to cope with and help it to win the tug of war. Then there will be some things on the other side, which help with your condition or recovery, which help you to cope, and which help you to win the tug of war!

Can you think of the things that do not help you cope?

What about the things that do help you cope?

You can make your own tug of war by writing your ideas down in the space below.

Tool 1 – Your team

Can you think of all the people who help you in the tug of war? These people make up your team and are a very important part of your toolkit.

On your team you might have:

you        parents         doctor        nurse        specialist

physiotherapist       brothers or sisters         friends

teachers      psychologist

Can you think of anyone else?

It is very important for every1 on your team to remember that you are a child just like all other children, it is just that you have a health condition that means you have some extra needs.

Getting in touch with other children who have the same condition, who have already been through limb reconstruction surgery can help you feel you are not the only person going through it. There may be other children in your school or at your youth club who you can talk to. Or you might ask your team about getting in touch with other children through local or national support groups.

Tool 2 – Positive thinking

Earlier in this booklet we looked at how limb reconstruction surgery can make us feel and think negatively about ourselves at times. In this section we are going to look at how you can change some of these negative feelings and thoughts into more positive 1s that make you feel good about yourself. Let’s call this tool positive thinking.

Here are some ideas to help you think positive:

• Make a list of the upsetting or negative thoughts you have about your condition or limb reconstruction surgery. When you have d1 this, work out some good positive thoughts. For example, if your negative thought is “My condition will never get better and it always gets in the way”, your positive thought could be “My condition is not all I am about and I can do almost everything all my friends do“. Practice your positive thoughts every day. They will help you feel stronger to cope with your condition and operation.
• Make a list of all the things you like about yourself. You may be a friendly person, be good at art or music, have a good sense of humour, or be a good listener. Put down anything you can think of and ask others what they like about you. Put these things on your list too.
• Ask yourself: “What would I say to a friend who was feeling upset about their condition or surgery or thinking negative things about themselves?”
• Try not to make assumptions (these are guesses you are not sure are true) about what other people are thinking. People may ask you about your condition or fixator but it does not mean they are being unkind – they may just be curious or just not understand.
• It can help to have a simple explanation ready to give people if they ask about your condition or operation or fixator. Some children choose to say something like “It’s just a frame to help my legs, it won’t there be forever”. Maybe you could practice what you would like to say with a friend or relative.
• Imagine you have a coach on your shoulder reminding you that there is much more to you than your condition. You coach might be a favourite cartoon character, popstar or some1 else you admire. Your coach can remind you to think positive.

Try to remember that everybody has something they would like to change about themselves, whether it is about their skin, their height, their ability to remember their times tables, or whatever! Remember that nobody is perfect.

Tool 3 – Distraction

Distraction can be a very useful tool to have in your tool-kit to beat lots of things, such as discomfort, boredom and worry. Distraction means concentrating on something else so that you do not notice the unpleasant things.

Here are some ideas you can use to distract yourself are:

• watching TV
• playing with friends
• singing songs or playing counting games
• playing on the computer
• painting or crafts

Make a list of your top 5 distraction activities for when you are feeling in discomfort or bored. Ask your team if they can make any good suggestions.

Some other ideas to distract yourself include:

• Breathing ideas:
  • Blowing a feather – imaging a feather resting on the back of your hand and blowing it very gently so it will not blow away but just quivers gently.
  • Blowing soap bubbles – count them, see where they go, how big they are.
  • Blowing up imaginary balloons – imagine all your worries or fears filling brightly coloured balloons by you blowing very gently and slowly, then let go of these balloons 1 by 1.
• Tense and relax – you could swap between squeezing your parent or carer’s hand or a squeezy ball and then letting go and relaxing.
• Read a pop up book and answer questions about the pictures.
• Tell jokes – take it in turns with your parent or carer.
• Storytelling – your parent or carer could tell you a story about yourself being brave or about a superhero character.
• Puzzles – such as:
  • “I spy…”
  • Times Tables or sums
  • Counting backwards from 100 in groups of 2, 3, 4
  • Hangman
  • Letter game – think of as many words beginning with a particular letter
  • “In my bag….” memory game with each turn you add something else. For example: You say, “In my bag there was a banana”. Next person says, “ In my bag there was a banana and a hat”. You say, “In my bag there was a banana, a hat and a pencil”…and so on.
• Singing – sing a fun song or pop song. Try to take it in turns to sing alternate lines, or play guessing a song by tapping it out on the table.
• Magic carpet ride – imagine you are on a magic carpet, travelling to a place where you feel comfortable and happy. You can imagine all the things you can see, hear, smell, feel as you sit on the carpet and travel to your favourite place.

Tool 4 – Relaxation and guided imagery

These tools use the power of your imagination. Your imagination can help you to overcome discomfort, and help you cope with pin-site cleaning. Relaxation and guided imagery can also help you to fall asleep at night and to get back to sleep if you wake up in the night.

Relaxation

Relaxation is a skill, like playing sport or reading, which gets better the more we practice it. If we learn to relax our muscles and our minds we can escape the tense feelings and upsetting thoughts we might be having about ourselves. To relax you might like to listen to your favourite music or story. Another way is to practice using the script in this booklet. You will need somebody to read the script to you whilst you sit in a comfortable chair or lay on your bed.

Guided Imagery

Many children like a story to help them to relax because it is more fun and takes their mind away from what is going on around them. It can be any story you like. You just need to imagine a place and all the sights, the sounds, the textures and the smells there. It can be a place you have been to or somewhere you have just imagined. The script in this booklet includes a guided imagery story but you might prefer to make your own story up.

Using your imagination if you feel discomfort

Once you are relaxed it can be helpful to use the power of your imagination to control any discomfort you may be feeling. Your mind’s power can be stronger than the messages from your body! The script in this booklet includes some ideas to help your mind feel more in control if things feel difficult. After practicing, you can choose a word that you can say to yourself to help you in future. This might be a word from your story such as “magic pool” or “special cream.” Or you might choose a word like “relax” or “calm” to help you to feel less stressed.

Relaxation and guided imagery script

Some parts of this relaxation may not be possible, depending on which part of your body is affected and has underg1 surgery. Just ignore the bits you are not able to do, and enjoy the bits you can!

Start by making yourself feel comfortable, either lying or sitting down, then close your eyes and concentrate on your breathing. As you breathe out imagine that you are breathing out any tension or worries and as you breathe in imagine you are breathing in calmness and relaxation. At the same time, start to let your body relax.

Now you are going to start tensing and relaxing the muscles in your body in turn, beginning with your hands. Clench your hands into fists, squeeze them tightly and hold this for a few seconds … 1 … 2 … let go slowly. Notice the change from tension to relaxation in your hands and allow your hands to feel soft and floppy and relaxed. Now once more, squeeze your hands tightly into fists and hold it for 1 … 2 … and relax and notice how the muscles in your hands feel nice and soft when they relax.

Moving onto your arms. Bend your arms at the elbow and touch your shoulders with your hands. Squeeze the muscles in your arms tight and hold for 1 … 2 … and let them go. Let your arms relax and fall by your side. As they go soft and floppy, like spaghetti, notice the change from tension to relaxation. And again, bending your arms at the elbow touches your shoulders with your hands and squeezes your muscles tight to let the tension build up 1 … 2 … and relax. Notice your arms becoming more and more relaxed.

Now, hunch your shoulders up to your ears. Feel the tension in your neck and shoulders … hold it 1 … 2 … and then relax. Let your shoulders fall back to their resting position. Notice how different they feel when they are relaxed. And again lift your shoulders up to your ears, hold them there … and then let them go. Relax.

Now, your stomach. Take a deep breath and hold it for 3 seconds, tensing the muscles in your stomach as you do. Hold it for 1 … 2 … 3 … and then breathe out slowly. Notice the change from tension to relaxation in your stomach muscles and allow this change to continue further and further still so your stomach muscles become more and more relaxed. And again, take a deep breath in, hold it for 1 … 2 … 3 and let your breath out slowly. And as you breathe out imagine you are blowing away any worries or troubles.

Now, moving up to your face. Clench your teeth tightly together. Hold it for 1 … 2 … and then relax. Let the tension go out of your jaw. Notice how different it feels when it is relaxed. And again clench your teeth tightly together, build up the tension in your jaw … 1 … 2 … and now relax. Let your face relax more and more.

Wrinkle your nose up. Notice how tightly you can wrinkle it and hold it for 1 … 2 … and then let it relax. Notice the change. And again, wrinkle your nose up tightly 1 … 2 … and relax. Notice the change from tension to relaxation in the muscles around the front of your face, and allow these muscles to relax more and more.

Shut your eyes tightly. Squeeze them tight and hold for 1 … 2 … and relax. Let all the tension slip away from your eyes – let it all go. And again, squeeze your eyes tightly shut. Hold it 1 … 2 … and relax. Notice the change from tension to relaxation around your eyes and let yourself become more and more relaxed.

Now that you have done all your muscle exercises, check that all areas of your body are as relaxed as can be. Think of your hands and allow them to relax a little more.

Think of your arms and allow them to relax a little more.

Think of your shoulders and allow them to relax a little more.

Think of your legs and allow them to relax a little more.

Think of your stomach and allow it to relax a little more.

Think of your face and allow it to relax a little more.

Now think of your breathing.

Breathe in … 1 … 2 … 3 … and out slowly … 1 … 2 … 3 … 4 and again.

Breathe in … 1 … 2 … 3 … and out slowly … 1 … 2 … 3 … 4 and again.

Breathe in … 1 … 2 … 3 … and out slowly … 1 … 2 … 3 … 4 and again.

And now, while you are very relaxed, I would like you to choose your own special, private place where you know you can feel safe and happy and enjoy being yourself. It might be a favourite place where you often go, or it might be a place you have imagined. What is important is that you should feel safe and comfortable in this special place of yours. Pay attention to all the things you can see, hear, touch, taste and smell in this special place. As I count from 1 to 10, settle yourself down in this special place.

Now as you relax in your special place, there are other things you can do to help yourself. Perhaps you would like to imagine you are walking in a forest of fir trees. It has been snowing and you take some cool soft snow from the glistening trees and put it gently to your skin. As you do so, you notice any discomfort disappearing. And now, I’m going to ask you to imagine a beautiful magic pool in your special place. You go over to the pool – the water is clear and you can see fish of all colours swimming about. You go over to the pool and dip your toes in. The water feels cool and delicious, and you decide to get in. As you float in your magic pool, you feel the cool water on your arms, your legs, your back and shoulders. Feel how cool and gentle it is, how it soothes you and makes you feel comfortable. Enjoy floating in your magic pool for as long as you like, just relaxing, and letting the water take away any discomfort or worries. And when you are ready, you can get out of your pool and lay back and relax. And now I am going to ask you to imagine that you are making some very special cream. You have a big mixing bowl and I would like you to put into that mixing bowl all your happy feelings and memories. Do not put any bad feelings or memories – only the things that make you feel good. Perhaps you could put into the mixing bowl the names of all the people who help you to feel happy. Perhaps you could put in all the good things you know about yourself. Put in all the things you are pleased about or proud of. Now stir the mixture round so that it forms a rich smooth cream. Take as much of that cream as you need and gently rub it into your skin, covering your legs, arms, face, back, stomach, everywhere. Feel how comforting it is as the cream softens and soothes you, leaving your skin feeling soft and smooth. Feel how the cream sinks into your skin, making you feel relaxed and calm. And feel how the magic cream helps you feel comfortable.

In a moment, I shall count back from 10 to 1. If you are listening to this at night and would like to fall asleep and wake up refreshed in the morning, you can do this, or you might prefer to open your eyes as I count and feel refreshed and awake. It is up to you but remember that you can visit your special place, swim in the magic pool and put on your magic cream, anytime you want to, just by relaxing and using your imagination.

10 … 9 … 8 … 7 … 6 … 5 … 4 … 3 … 2 … 1 ……

Dealing with teasing and bullying

Unfortunately, there may be times when you experience teasing bullying. This may or may not have something to do with your condition or fixator. The important thing to remember is that having a health condition and needing limb reconstruction surgery is not your fault and it does not make you any less of a person. It is very important that you let somebody on your team know if you are being bullied or teased. You can tell your parents, your teacher, your nurse or someone else you trust. They will be able to help the bullying stop and will probably have some ideas about how you can respond to teasing.

Here are a few ideas that some children have found useful, if they are experiencing teasing or bullying:

• It can be very useful to think of some ways to respond to teasing. You might use humour or you might ignore any comments. Some children find it helps to practice their responses with member of their team. Here are some examples:
  • “There’s no need to stare – I know the frame is there”
  • “That’s boring – is that the best you can do?”
  • “Why does my fixator bother you?”
• Some children find the magic bubble very helpful with teasing or people staring. This is where you use the power of your imagination to picture yourself in a very strong see-through bubble, which is invisible to other people. Your magic bubble can be as big as you like and any colour you choose. Whenever anybody says something to you that you do not like, it just bounces straight back off the magic bubble and cannot get through to upset you or make you angry.
• Remember your positive thinking. Remind yourself that some people may have never seen a fixator before and just do not understand what it is about. Remind yourself of all the things that you like about yourself and are proud of and all the things that your friends, family and other people like and love about you. Say something positive to yourself. Here are some examples:
  • “I can cope with this”
  • “It’s only one part of me. There is a lot to me than my condition or fixator”
  • “I’m doing okay – I’m taking one day at a time”
• Sometimes, being friendly or changing the subject can be helpful. Join in with people. Try to stick with your friends who like you for you.
• Remember, that you are not the only person who gets teased and that everyone has got something that other people can tease them about. Remember that the teasing will not go on forever, but do talk to someone you trust about it.
• Use your body language to give yourself confidence. You could try looking people in the eye, using a loud voice and holding your head high. You can use your body language to look confident on the outside – even if you do not feel it on the inside.

Can you and your team think of any other ideas to help with teasing or bullying?

Reward chart

here is a reward chart that you and your team can use to note down your daily or weekly progress. For example, you might decide to use it for recording how often you do your physiotherapy or pin-site cleaning. You could use ticks or stickers to record every time you do the task and you could agree a reward at the end of the week or whenever you complete the chart. You could photocopy this page or draw your own chart.

My goals. What am I working on?

How often each day?

My reward will be?

By when?