SO WHAT DO
I DO NOW? TH E CA NCE R MANUAL
Help yourself to a hea lthy f uture
A manual to support patients living with and beyond cancer
THE CANCER MANUAL: NOT JUST A BOOK WHY THIS MANUAL’S BEEN WRITTEN… You have finished having treatment and may not have completely recovered from the effects of this yet. Your next appointment isn’t for a while but you’ve been used to regularly seeing a doctor, nurse and/or other health professionals at the hospital. The chances are that since your diagnosis, treating your cancer has taken up a lot of your time and energy and now your treatment has finished you may be thinking ‘So What Do I Do Now?’ This manual will give you positive ideas, things to think about, plan and do which will help you live well with or after cancer. This manual isn’t just a textbook of information. It is a rehabilitation tool – an important part of your recovery. However, it may be that not all sections will be relevant to you. It is designed for you to use as you wish and for you to adapt to your needs. As you require advice and/or information you can dip in and out to the relevant sections. You do not need to read it from beginning to end unless you want to. It will be something you can refer to now and in the future. Now you have finished your treatment you can do certain things to ensure you have a healthy lifestyle and hopefully help you remain disease free or living well with your cancer. Lifestyle factors are an important part of your continued recovery.
You might like to write down the name(s) of your facilitator(s) here: Facilitator Name Contact Phone Number
SO WHAT DO I DO NOW? | NOT JUST A BOOK
This manual has been given to you by a healthcare worker (usually a nurse) who has been specially trained to work with patients using the manual. We call this person a facilitator.
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EXERCISE
THE BENEFITS OF PHYSICAL ACTIVITY AFTER CANCER TREATMENT Physical activity is important for everyone and the benefits are well known. Advice always used to be to rest as much as possible during and after cancer treatment, but we now know that regular physical activity can help your recovery in many ways Cancer and its treatments can cause many physical changes including muscle weakness, stiffness and fatigue which often cause people to slow down and become less active. Adding some regular exercise into your routine can help you to feel fitter, stronger and healthier.
WHY IS EXERCISE SO IMPORTANT?
Help look after your bones
Help maintain a healthy weight
Reduce fatigue (extreme tiredness) Improve muscle strength and flexibility
Reduce stress & anxiety
Exercise can:
Help keep your heart healthy
Help to improve balance
Reduce the risk of the cancer coming back
SO WHAT DO I DO NOW? | EXERCISE
Minimise other health problems
Boost good mood
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DO I OR DON’T I? Over time, this manual will help you to get better in stages but here are some general tips for starters:
Do:
SO WHAT DO I DO NOW? | EXERCISE
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DO take exercise every day
Advice used to be to rest as much as possible during and after your cancer treatment. We now know that this is not beneficial, and regular exercise can help to make you feel better. Following the advice in this manual about setting goals can help you to build exercise into your daily routine.
DO take a rest every day
If you have been spending a lot of time resting, it is important to gradually increase the amount of activity you do and allow yourself to rest when your body tells you. You are likely to be easily tired in the early days so build up slowly, but remember that increasing your activity levels will mean you have more energy and won’t feel the need to rest quite as much.
DO pace yourself
Both overdoing it and underdoing it are bad for your recovery. Don’t try to be superhuman, but don’t be afraid to do things if you feel ready. Decide what you can do easily. Try it out, and if you found it pretty easy, do a bit more tomorrow. If it was too difficult, do a bit less next time. The manual includes a lot of information about setting targets for yourself.
DO follow the manual
It will tell you what changes you need to make to your lifestyle. It is important to make these changes now. As the memory of your cancer fades, your determination may fade too.
EXERCISE AND ACTIVITY PLAN • In this manual you will find advice about how to start your walking or chosen exercise plan [see page 21] • In this manual you will find a set of five exercises and some stretches [see pages 28-32] • Read the instructions carefully and if there’s anything you don’t understand, ask your facilitator about it. • You should do your exercise/activity plan regularly. A walking and exercise record in this section of the manual will help you to decide if it is time to do a little more.
The plan is in four stages Stage 1
=
Getting started on your plan
Stage 2
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Gradually building up your plan
Stage 3
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Thinking about lifelong exercise/activity
Stage 4
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Regular lifelong exercise/activity
IMPORTANT THINGS TO REMEMBER ABOUT EXERCISE
EXERCISE SHOULD MAKE YOU BREATHE HARDER AND FEEL WARMER This is normal and should be your guide to how much your fitness is improving. When exercising, a general rule for everyone is not to exercise until you are so breathless that you can’t speak – you should be able to speak normally while exercising.
SO WHAT DO I DO NOW? | EXERCISE
• Follow the Exercise/Activity Plan • Trying to do too much too soon may slow down your recovery • Use common sense • Always warm up your muscles before exercising and again cool down afterwards • You’ll probably have good days and bad days - On a good day, don’t be tempted to do more than the plan - On a bad day, try not to put off doing your plan. Ask yourself if you’ve been doing a lot more than usual over the past few days. This may explain why you feel a little tired. Sometimes you may not be able to identify a trigger for a bad day but don’t get disheartened. Try again tomorrow
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CANCER AND HEALTHY EATING This section is for people who don’t have any weight or appetite problems and would like to follow a healthy diet
WHY IS A HEALTHY DIET IMPORTANT? • Maintaining a healthy weight and eating well will help you to keep or regain your strength and feel energised after your cancer treatment • A healthy diet helps with your overall well-being and can reduce the risk of new cancers, heart disease, stroke, diabetes and other medical conditions • Some people may have been told there is an increased risk of developing other health conditions after cancer treatment. If this relates to you, it is particularly important to follow a healthy diet to help prevent them.
HOW DOES DIET AFFECT CANCER? • There is currently a lot of research looking into which types of food may affect our risk of developing cancer • We are still learning exactly how our diet influences our cancer risk • We do know that we can keep a healthy weight with a balanced diet and regular exercise and we know which types of food keep us healthy, which can help reduce the risk of developing some cancers.
CAN A HEALTHY DIET REDUCE THE RISK OF CANCER COMING BACK? • There are currently many studies exploring this but there is some early evidence that diet may make a difference to the chance of some cancers returning • Currently we do not have enough information to give exact guidance on what someone with, or recovered from, a specific cancer should eat • It is recommended that everyone follows a healthy balanced diet. SO WHAT DO I DO NOW? | DIET
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CHANGING MY DIET SOUNDS UNPLEASANT • Making any changes in our lives can be challenging. It can be even more difficult after you have had cancer treatment • We have given you further guidance and where to access support to help you identify, make and sustain changes throughout the diet section
AM I A HEALTHY WEIGHT? • It is not good for us to be either overweight or underweight as it can affect our health • You can work out your healthy weight using the Body Mass Index (BMI) calculation [see below] or see the BMI chart [page 40]. Please be aware that this does not account for any weight you are carrying that relates to extra muscle, water retention or excess skin as in these situations it will give a false result • BMI is also interpreted differently for older people and people from South Asia.
Your BMI score will give an indication towards your weight compared to your height: • BMI less than 18.5 is underweight • BMI between 18.5 and 24.9 is a healthy weight
• BMI between 25 and 29.9 is overweight • BMI of 30 or higher is obese • BMI of 40 or higher is very obese
How to calculate your BMI… BMI = Weight (in kilogram) ÷ height (in metres) 2 For example: Weight 70kg, height 1.8m (height2 1.8 x 1.8 = 3.24m2) 70 ÷ 3.24 = 21.6 kg/m2 BMI = 21.6 kg/m2 (healthy weight)
There are body mass index calculators that do the calculations for you on websites like NHS Choices, Cancer Research UK and the World Cancer Research Fund
My BMI is_____ kg/m2
Date ……….
My BMI is_____ kg/m2
Date ……….
My BMI is_____ kg/m2
Date ……….
My BMI is_____ kg/m2
Date ……….
SO WHAT DO I DO NOW? | DIET
KEEP A RECORD OF YOUR PROGRESS AND SMILE!
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RELAXATION
RELAXATION WHAT IS RELAXATION? Deep relaxation, the kind described on the relaxation CD that comes with this manual, is the letting go of tension in body and mind.
When we are relaxed, the adrenaline level in our bloodstream goes down. This makes us feel calm. It also has important benefits for our health
WHAT IS BAD ABOUT TENSION? Muscles that are tense are working hard, even though they are not moving. This is why being tense can make you feel as exhausted as if you’ve just run a marathon, even though you’ve been sitting in a chair all day!
It is important for everyone to have times when they relax during the day – not just after an illness, but for good health in general
The muscle tension can cause unusual aches and pains, headaches, stiff neck and unusual chest pains – in fact, pains almost anywhere.
WHAT CAN RELAXATION DO FOR ME? It is the first step in learning to control stress. Relaxation has many benefits for health. It can help you:
It takes time. At first it may seem that very little is happening – but stick with it!
SO WHAT DO I DO NOW? | RELAXATION
• Reduce stress • Cope with problems • Increase your feeling of being in control • Lower your blood pressure
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SIDE EFFECTS OF CANCER & TREATMENT
EMOTIONAL SIDE EFFECTS The stress of cancer and the side effects of treatment can affect your emotions in various ways: • Fatigue (tiredness) • Depression • Loss of sex drive • Insomnia (sleep problems)
FATIGUE Fatigue is described as an overwhelming feeling of tiredness or exhaustion. It can occur as a result of having cancer treatments. Fatigue can also be caused by anxiety or depression [see below & page 97]
ANXIETY It’s normal to worry after you have had cancer. Who wouldn’t worry in the same situation? Obtaining more information about worry or anxiety can help many people to handle it better. That is what this section is about. ANXIETY CAN CAUSE SOME OR ALL OF THESE PHYSICAL FEELINGS:
SO WHAT DO I DO NOW? | EMOTIONS
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• Dry mouth • Butterflies or tightness in the stomach • A cold sweat • Rapid pulse • Palpitations • Rapid breathing • Cold, clammy hands and feet
• Tense sore muscles • A sensation of being far away or distant from what’s going on • Feeling faint • Strange pains • Tingling in the feet and hands • … and many other feelings
Difficulty in concentrating
Difficulty in remembering
Feeling that you are going mad
Difficulty with decision making
Racing thoughts
ANXIETY HAS THESE EFFECTS ON THE MIND
Lack of self confidence
Feeling that your personality has changed
Problems with sleeping
ANXIETY CAN CAUSE SOME OR ALL OF THESE PHYSICAL FEELINGS: • Not listening to what people are saying • Restlessness • Bad temper • Losing your sense of humour • Becoming socially isolated
• Feeling dissatisfied • Fidgeting • Flaring up at little things • Becoming overcritical or sensitive • Getting annoyed by everyday noises
ANXIETY - SOME SOLUTIONS… RELEASING TENSION
These actions don’t harm anyone and may leave you feeling better
It may feel like everything is getting too much for you. If you feel this way, it might help to thump a cushion or pillow.
SO WHAT DO I DO NOW? | EMOTIONS
• Tension can often be released by talking to other people • You may find it helpful to write things down: keeping a journal or diary is a way of expressing feelings, fears and worries, without having to talk them through with anyone else. • You could express yourself by drawing, painting, playing music or another creative hobby. • Having a good cry or even just going for a walk may help to release your emotions.
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THE STRESS THERMOMETER
Panic Worried Tense EXCITED WIDE AWAKE Sleepy Very relaxed
The stress thermometer shows how we feel as the adrenaline level rises. As it rises so we move from being deeply relaxed to being wide awake to being excited. If it goes up too much it makes us feel tense, bad tempered, tired, pressurised, fed up, etc.
Too much adrenaline can make us feel wretched. A row with someone, a loud bang or a crisis that is soon over may make your heart beat faster, but it won’t hurt you in any way.
Stress is not bad for us unless it is very severe or it goes on and on
But having nothing in your life but work and worry, being unable to switch off from your responsibilities, never stopping to relax – these things are bad for you.
SO WHAT DO I DO NOW? | EMOTIONS
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An ordinary level of stress is GOOD for us – having things to do, goals to meet, difficulties to get over and so on.
3 It keeps us alert and awake to cope with things we have to do.
A higher level of stress – what we get from working hard, horror movies, funfair rides, sport, exciting games and so on – is good for us as well.
3 It gives us the enjoyment and
excitement that we all need to keep happy and find life worth living
The problems start when we: • Can’t turn off these higher levels of stress • Become addicted to living flat out • Work all the time and never give our body or mind a chance to rest • Feel tense, worried and anxious a lot of the time.
Feeling tense, worried and anxious can lead to damaging levels of stress which need to be managed…
1 The first step is to realise that we have the problem – this is not always easy. 2 The second step is to use relaxation and exercise and increase enjoyable activities [see the sections on Exercise, page 11 and Relaxation, page 71].
3 The third step is to change permanently to low-stress ways of living and working HOW TO BECOME A RELAXED PERSON IN THREE EASY STAGES
1 LEARN TO SPOT WHEN THE STRESS LEVEL IS BUILDING UP One of the problems about being under stress is that you may be the last person to notice it. To other people you may seem, like this:
You may think: ‘If they had all the things that I have to do and all the problems I’ve got they wouldn’t have time to sit around chatting. As for being bad-tempered, it’s no wonder I get like that with the kind of support and help they give me.’ Or you may think: ‘They’re right, but what can I do about it?’… Read on!
SO WHAT DO I DO NOW? | EMOTIONS
• Always rushing • Unable to make decisions • Forgetful • Sudden changes of mood • Tense • Always critical of others • Quick to flare up • Don’t really listen to other people. • No sense of humour • Hate sitting doing nothing • Impatient
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BACK TO WORK
BACK TO WORK This information is mainly for people who have a job. If your cancer has kept you off work, you may be wondering when you’re able to return
This should be discussed with your GP or cancer nurse specialist. Returning to work can be an anxious time.
HERE ARE SOME TIPS WHICH MIGHT HELP Get advice first
When you feel ready to go back to work, talk to your doctor or cancer nurse specialist first. They can advise you whether you’re able to return.
Contact your employer
Get in touch with your employer and discuss your plans for coming back. Most employers will be very understanding and will let you do shorter hours with lighter duties at first.
Build up your working hours gradually
It’s probably not sensible to go straight back to exactly the same work routine as you had before your cancer. Plan to start with fewer working hours and gradually build up to your normal hours over an agreed number of weeks. For example, you could:
Start with lighter duties
Make a list of all the tasks that you do in your job – daily, weekly, monthly and one-off jobs. Put them in order from the easiest to the most difficult Discuss and agree with your bosses that, at first, you will only do lighter duties. Over an agreed timescale you can gradually get back to doing harder duties
SO WHAT DO I DO NOW? | BACK TO WORK
• Take work home initially – this might be a good option if you are a desk worker, manager, etc • Start with either mornings or afternoons, or • Spend alternate days working and not working • Then increase your hours gradually until you are back to normal
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