Surviving cancer manual

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surviving cancer The Cancer Survival Guide

Haynes Owners Workshop Manual

www.malehealth.co.uk.

ISBN 978 1 906121 92 1

Haynes Publishing, Sparkford, Yeovil, Somerset BA22 7JJ England

www.haynes.co.uk

Taking care of your health

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Surviving Cancer The Cancer Survival Guide

Contents

Introduction . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Taking care of yourself . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Symptoms and side effects . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Coping with stress . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Loneliness and isolation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Home from hospital . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Exercise and eating well . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Money matters . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Caring for someone with cancer . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Grieving and coping with bereavement . . . . . . . . . . . . . . . . . . . . . . . . .

Websites for cancer and men . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Contacts . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .

Š Ian Banks 2010 Revision date: April 2012

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(029-12454)

Cartoons by Jim Campbell; the one on page 3 used by kind permission of the Irish Cancer Society, www.cancer.ie ISBN: 978 1 906121 92 1 All rights reserved. No part of this booklet may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording or by any information storage or retrieval system, without permission in writing from the copyright holder.

Printed in the UK. Haynes Publishing, Sparkford, Yeovil, Somerset BA22 7JJ, England Haynes North America, Inc, 861 Lawrence Drive, Newbury Park, California 91320, USA Haynes Publishing Nordiska AB, Box 1504, 751 45 Uppsala, Sweden The Author and the Publisher have taken care to ensure that the advice given in this edition is current at the time of publication. The Reader is advised to read and understand the instructions and information material included with all medicines recommended, and to consider carefully the appropriateness of any treatments. The Author and the Publisher will have no liability for adverse results, inappropriate or excessive use of the remedies offered in this book or their level of effectiveness in individual cases. The Author and the Publisher do not intend that this book be used as a substitute for medical advice. Advice from a medical practitioner should always be sought for any symptom or illness.

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Introduction Cancer is serious stuff so let’s get that settled right now. The good news is, vastly more men will survive cancer than will fall to it. Not a lot of men know this. This manual is not about preventing cancer but about helping you cope if you have, or have had, cancer.

What it will do is help you survive and cope. It will also help those who are helping you to do exactly the same thing. No promises, no wonder cures, just good solid advice for men who have cancer, and there are lots of us out there, you are most certainly not alone.

Early days Men are expected to be strong, tough and able to cope with anything that life throws at them.

In truth, no matter whether they are John Wayne or Steve McQueen (both of whom had cancer), men will feel confused, upset and even desolate when faced with cancer. Just talking to other people about it is not easy, especially when it’s family.

Having someone to talk to is important, and they don’t always have to be your best mate. Just talking helps you cope. Don’t knock it, human compassion is still out there, and more to the point, there are people and organisations who can help.

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Asking the right questions Before you start asking your doctor or other people’s advice, take a moment to think about what it is you want to know. Try writing this down as a question. Asking the right question will help you get to the right answer. For instance: • • • • • • • • •

What happens to me now?

Who do I speak to if I have any concerns?

Is there a support group available?

I am worried about the cancer returning, how can I help avoid this and recognise it if it does?

How do I cope with physical and emotional changes?

How can I get in touch with self help groups?

What is the best way of getting counselling for myself and for those who care for me?

Who should I talk to about money?

If I think the cancer may have returned after treatment is over, what do I do?

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Taking care of yourself It’s not surprising that some men lose motivation and begin to back off from things they would normally do. No problem, you are in charge of your own life. You may not go out as much, or you might want to sit in one room. This is no problem, but it helps if the room you are in is light and airy. Try not to sit still in one place for long periods of time. Listening to music or radio programmes may also help you feel better. Even small activities like these can help you to feel like doing things again and this will make it easier to ask for help. On the other hand some men just want to get out there and do stuff. Neither is right or wrong. It all depends on you and what you are coping with. What does matter is that there are people out there to help you.

It’s not surprising that you may lose interest in your daily routine and looking after yourself properly, but this can be difficult for your loved ones. Making their job a bit easier will make things better for them and for you. Just getting regular meals helps them cope, as well as you.

Making plans to do things you enjoy will give you something to look forward to.

Without things to look forward to, life can feel pointless.

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More than just a body thing By now you are probably an expert on your cancer – once you know about your cancer and its treatment, another step you can take is to read about the emotional effects that it may have. Most men think they are alone in their feelings, but in truth most of us have a common reaction to cancer and its treatment. Feel like crying?

Want to shout at someone? Hey, join the club. But there are people out there who can help you get through this.

People to talk to • Macmillan cancer support specialists can talk to you about the emotional effects of cancer • Hospital specialist nurses are always there to help • Your GP or practice nurse can also give you further information and advice • You might want other people such as your partner or a close friend to learn more too, so that they know how best to help • Sometimes it is easier to talk to a friend or family member who has had cancer (as they understand your concerns, etc).

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Self help groups Self help groups can give you many benefits. However, not everyone finds talking in a group easy, so it might not be for you. It might help to go along to see what the group is like and then make a decision.

Self help or support groups give you the chance to talk to other people who may be in a similar situation and facing the same challenges. Joining a group can be helpful if you live alone, or don’t feel able to talk about your feelings with people around you. Even so, it isn’t every man’s cup of tea, so don’t feel that you are out of touch just because you don’t find them helpful.

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Symptoms and side effects Cancer and cancer treatments can cause a range of symptoms, side effects and long-term effects. No big surprise there, but most importantly these can often be effectively managed or controlled. Talk to your doctor or a nurse.

Fertility Some cancer treatments can affect your ability to have children. There may be various options for you to think about before or after your treatment. For instance there are ways of storing sperm before chemotherapy or surgery.

Lymphoedema (swelling) Fluid build-up causes swelling. This can be caused by the cancer itself or by some treatments. It can be painful and may make limbs feel numb. There are ways of preventing or reducing the swelling, so don’t be afraid to ask your nurse or doctor.

Pain People have very different pain thresholds and different cancers and treatments can cause very different levels of pain. Thankfully there is an increasing armoury of ways to combat this pain. Again, talk to your nurse or doctor, don’t just grin and bear it.

Fatigue Tiredness is very common during cancer and its treatment. There are things you can do to help manage the tiredness and make life a bit easier, but getting enough rest along with sensible exercise can help. See a bit later about Eating and exercise.

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Hair loss Your hair may become thinner or fall out completely due to cancer treatment. It will usually grow back again, but you can wear wigs and hats in the meantime. It can be upsetting, but fortunately for most of us men we do look great with a Patrick Stewart type hairstyle.

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Constipation Chemotherapy can cause constipation. Avoid using laxatives, and be sure to eat fibre-rich foods and drink plenty of fluids to keep the motions soft. If it is a real problem, talk to a pharamacist or doctor.

Mouth care Chemotherapy and radiotherapy can make the mouth sore or dry – knowing how to look after your mouth can really help. Avoid brushing your teeth too vigorously.

Avoid hard food like nuts for a while, and have a bottle of water at hand to rinse your mouth. Mouthwashes are fine so long as they are not used too often, as they can upset the natural environment of the mouth.

Worry, anxiety and panic attacks Hearing that you or someone you love has cancer is bound to cause distress. It can show itself in many ways. The fear and anxiety may be present all of the time or may come and go. Sometimes the feelings can be very strong and difficult to cope with. You may find that you can’t concentrate, are irritable and easily distracted, sleep badly and get tired easily.

What many men don’t realise is that fear and anxiety can also cause physical effects on the body including: • Overbreathing (hyperventilating). Breathing in and out of a paper bag can have dramatic effects on all these things which follow • Shaking. Like the things that follow, this can be from an imbalance in the blood from breathing too fast • Tense muscles. Jaw clenching is common when anxious • Breathlessness. This is usually just temporary • Palpitations (a sensation of your heart beating too fast) • Dizziness. Sitting down helps • Sweating, a natural reaction • A dry mouth, which will make talking and swallowing difficult • Feeling sick (nausea) • Diarrhoea. This can be short term but may be linked to the treatment as well • Chest pain. Often just a muscle spasm from breathing or coughing too hard • A lump in the throat • Pins and needles, particularly in the arms and legs • Flushing (redness) of the skin, or looking unnaturally pale.

It is tempting for well-meaning people to say ‘Pull yourself together, man!’ There is perhaps nothing worse you can possibly say to someone who is beside themselves with fear and worry. Talking to a trained counsellor or therapist can be enormously helpful as they are professionals and understand your fears.

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Coping with stress A relentless build-up of pressure, without the opportunity to recover, can lead to harmful stress. The important thing is to recognise the warning signs while you can do something about it.

The good news is that there are positive steps that you can take to deal with and manage stress, both at home and at work. It can be hard to be rational when you are feeling very stressed, which is why it’s important to take some time out.

Chill out Making time for yourself mentally and emotionally, as well as getting enough quality sleep is important so you can focus on relaxing your mind and recharging.

Quick fix Learning simple relaxation techniques can be an effective way of helping you deal with feelings of stress – try these simple exercises.

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Deep breathing Take a long slow breath in through your nose (breathing in from your belly), then very slowly breathe out through the mouth; really concentrate on your breathing, and after a few repetitions you should begin to feel more relaxed.

Tensing and stretching your muscles Rotate your neck to the side as far as is comfortable and then relax. Repeat on the other side. Try fully tensing your shoulder and back muscles for several seconds, and then relax completely.

Long-term fix Take time to relax, even if it’s just having a long bath or listening to music. Try to have a good night’s sleep – adults usually need, on average, 7 to 8 hours. If this is not possible, aim to have at least 4 hours of sleep at the same time each day as this can help to keep your sleep clock regular.

Relaxation techniques or meditation can also be useful for many people in helping them to feel more able to cope – you can buy relaxation music, and there are many types of relaxation classes available like meditation, yoga and Pilates.

Leave it out Try to avoid taking refuge in smoking, junk food or too much alcohol! This won’t help your stress levels. Avoid too many caffeinated and sugary drinks as they may make you feel more anxious and bursts of sugar can cause mood swings.

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Quick fix Drink plenty of water. This will help you concentrate better, and may stop you getting stress headaches which can be caused by dehydration.

Long-term fix Improving your diet and drinking plenty of water will increase your body’s resistance to stress. Eating fruit and vegetables really boosts your immune system, especially in times of stress. It’s important to make time for proper meals to help you stay energised.

Pet care People without a pet can underestimate the impact ill health can have on caring for them and the distress this can cause. Chat to the RSPCA and Macmillan nurses if you have to go into hospital for treatment or are no longer able to look after your pet.

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Loneliness and isolation One of the most common feelings men have is loneliness and a sense of being on their own. This isolation can affect people at different times in their illness: when they are diagnosed, during treatment and afterwards. Anyone affected by cancer may experience loneliness and isolation.

There can be many reasons why people feel alone. Coping with the feelings and changes cancer brings can be a lonely experience. Having to cope with changes to your appearance such as losing your hair or losing weight may add to the sense of isolation. It’s feeling different to other people that can be so hard.

You may feel lonely even if you’re surrounded by family, because you feel that no one really understands what you’re going through. People react differently. Some people respond by wanting to fight and not let cancer ‘take them over’, others allow the doctors to take control. Some people prefer to feel in charge of their own wellbeing and support themselves in a variety of ways. Everyone’s different and there is no ‘right’ way of behaving.

Often the sense of isolation is made worse if you find it difficult to talk about how you feel and what you are going through. It can be hard talking to friends and family about how you really feel; you tell them that you’re fine, when you feel very different inside. You may find yourself giving people other reasons for not being yourself, such as ‘just feeling tired’.

If you can find the courage to talk to just one person about how you feel, it can be the first step towards helping you to feel better. The less you talk about it, the more cancer may become all you think about. And the more alone you can feel.

Cartoon to be colour

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Home from hospital Coping at home These days you tend to get home quickly, but it is important that you are ready to leave hospital. Basically there are three areas of treatment which can have overlapping effects on coping at home. Some people may only have one form of treatment but many will have more than one.

Surgery How long you need to stay in hospital depends on the type of operation you have had and how quickly you recover. You will need to give yourself time to get over the surgery. You may find that you tire easily and need to rest during the day at first. It can take several weeks or even months to fully recover from a major operation.

If you have a dressing over your wound, your ward nurse may arrange for a district nurse to come to your home to change it. Or you may be able to go to the GP surgery. The nurse will also tell you if you need to have any stitches or clips taken out and whether you can have this done at the hospital or GP surgery.

Chemotherapy Some people find that they can lead an almost normal life during chemotherapy, and get back to their usual activities as they begin to feel better.

Taking chemotherapy tablets at home might not make much difference to your daily life, but everyone is different and it is best to do whatever you feel is right for you when it comes to returning to work.

As well as feeling unwell physically it is not unusual for people to have ups and downs emotionally. Coping with a diagnosis of cancer and with having treatment is not a small thing.

Drugs have different side effects – for example, they don’t all cause hair loss or sickness. The side effects can vary for different people though. Some people find that they get only very mild side effects. It is not possible to say beforehand whether you will have a particular side effect, when it will start or stop, or how bad it will be for you.

• M ost side effects don’t do any lasting harm and will gradually go away after your treatment finishes • Many of them can be reduced. Discuss this with your doctor or nurse • If you don’t get side effects, it does not mean that your treatment is not working.

Radiotherapy People receiving radiotherapy often return home in between sessions. The impact it can have will depend a great deal on the type of cancer you have and any other

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treatment you are receiving. There is little effect at first from radiotherapy so you will probably not notice much difference when you return home.

Even so, most people feel tired while they are having radiotherapy, particularly if they are having treatment over several weeks. This is because the body is repairing the damage to healthy cells. The main thing is not to worry about feeling tired. Try to exercise a little when you can, as this may help.

You may have other general symptoms, such as feeling as if you are coming down with a bad cold or flu, for a few days after you have had radiotherapy.

Some people get sore skin in the area being treated, and hair can fall out in the treatment area. Hair in other parts of the body is not affected. The hair should begin to grow back again a few weeks after the treatment ends.

Life after treatment

It is a huge relief when treatment is ceased or scaled back. Often there is no actual end to treatment, but rather different and less frequent treatments. You now have the chance to look at how you want to live in the future. You may want to do things you’ve often thought about but never done, perhaps visit places you’ve always dreamed about, or enrich personal relationships. There is a lot you can do yourself to help adjust and stay active.

They thought it was all over Cancer, like a bad penny, can turn up again.

There may be decisions and plans you want or need to make if this happens. Most people recognise a returning cancer themselves although it may be found through monitoring your treatment.

It is not necessarily the end of the world and, as with the cancer when it first arrived, early treatment can help enormously. Cancer doesn’t always return in the same way as it started, but there are often common signs or symptoms such as unexplained weight loss, pain in new places, increasing fatigue and swelling.

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Exercise and eating well Being active means different things to different people. Without doubt it can help you cope better, but not if it leaves you exhausted. You could go for a walk each day, or if you are able and have the chance, try cycling or swimming. If the cancer or its treatment has left you disabled then swimming may be the ideal form of exercise.

When you exercise, your body produces mood-improving chemicals which can help to ease aches and pains. Regular exercise keeps your body topped up with higher levels of these ‘good mood’ chemicals. Even the simplest things like stretches may help you to feel better.

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It’s not just how you eat, it’s what you eat Cancer and its treatment can sometimes cause problems with eating, not least with a sore mouth or stomach. You may also find you are not absorbing food as well as before, so weight loss can be a big problem. Quality of life is often linked to enjoying food, especially sharing time with those we love.

The trick is getting more protein and energy without having to eat more. Ask your dietician, either at the hospital or GP surgery. Macmillan carry excellent advice on their website. If you are badly run down or cannot eat in the normal way it is still possible to get food in, although perhaps fish and chips might be tricky as it can involve a tube which delivers food directly to the stomach. Nutrition can also be given straight into a blood vessel. They say it tastes a bit like chicken.

Wacky diets There are ‘alternative’ diets for ‘treating’ cancer which get a lot of publicity, but they can often be expensive and may even be harmful to some people with cancer. Ask your dietician first.

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Taking medicines As if coping with cancer was not enough, you may have to juggle a whole battery of medicines which need to be taken at a particular time. Not surprisingly it may be difficult to remember to take all your medicines at exactly the right times, for example before or after meals. Modern medicines often depend on this for best results. Your doctor may be able to have your medicines delivered in a daily dosing system box (such as a nomad or dosette box) which may make it easier to remember to take them. Your pharmacist can provide a box containing all your pills, separated into compartments for the different times of the day and days of the week. You can see at a glance whether you have taken all your pills correctly. If part of your treatment involves taking steroids, make sure you don’t take them late in the day as you won’t be able to sleep!

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Alcohol Oh, but the temptation to relax and ease the worry out of a bottle. Well why not?

But as Winston Churchill said, the trick is get more out of alcohol than it gets out of you. A couple of drinks can help, but after that things can go wrong, not least with relationships at this very important time for everyone, especially carers. If you are having treatment for cancer or taking antidepressant medication, it can sometimes be harmful to combine this with alcohol.

Travel Healthcare in Europe is increasingly easy to get hold of for travelling UK citizens, but it still makes sense to plan holidays with special needs in mind. Vaccinations and taking medicines abroad for instance should be discussed with your doctor as far in advance as you can manage. Keep any medicines in their original packaging and make sure you have enough. Travel insurance is still essential in many parts of the world; be sure to tell the insurer about any health issues, or you may find you have no cover at all. You will probably find that an insurer will not include anything in the policy which could be connected with the illness.

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Money matters It certainly does, especially when you are not well. The last thing you want to think about is cash, but it is obviously important to keep an eye on it.

Share the load: ask There is no shortage of people out there who will offer advice, but unfortunately it can come at a price. Thankfully there are ways of getting free, frank and independent information from organisations like Macmillan and cancer support specialists. Many cancer support organisations, hospitals and self-help groups have benefits advisors. They can advise you and your family on whether you may be eligible for any benefits or grants. They have the added advantage of understanding what you are going through.

It’s also well worth checking out: • Social workers attached to your hospital • Social Security offices • Citizens Advice Bureau.

Depending on your financial state it may be helpful to contact an independent financial advisor (IFA), but this can be expensive and it helps if you have a recommended IFA from family or friends. Failing that, try looking in your phone book, or by contacting the Personal Finance Society (www.thepfs.org) or the Find a Professional website (www.findapro.co.uk).

Sick pay and financial benefits Nothing is straightforward when it comes to benefits, but there are people and booklets which can help cut through the bureaucratic manure. There will inevitably be things to be taken into account. A good start is the Department for Work and Pensions booklet explaining all the benefits you may be able to claim. Check out the local Citizens Advice Bureau or social security office. While you are there ask them to go through the way you claim.

A very low income may mean you can claim Income Support or Pension Credit if you are 60 or over. Income Support and Pension Credit can allow you to claim various other benefits (such as full Housing Benefit, council tax benefit or free school meals) so it is important to check whether you are entitled to claim these.

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Where to look • The phone book • You can also get information from the Benefit Enquiry Line on 0800 882 200 or the Department for Work and Pensions website at www.dwp.gov.uk.

Helpful best reads include: Help if you are ill or disabled (DWP 1026) Going into hospital (DWP 1029).

Men at work Your employer and trade union may be able to help you with benefits or point you in the right direction.

If you are unlikely to return to work before retirement age then you may be able to retire on medical grounds. You can ask your employer or human resources manager for details. It may affect any benefits you are receiving but it’s worth checking out.

Now is the time to pull out those insurance policies which often have built in income protection. Chatting to the insurance company can often cut through all the small print.

Company or occupational pension schemes may transfer into a personal arrangement. This would free up the money straight away. Trade unions often have financial advisors so try them before paying for an independent financial advisor.

Don’t forget to see if you have any insurance cover in the event of sickness and/or unemployment – for your mortgage, for example, or for any credit or store cards.

That’s what it is there for and yet so many people forget about it.

If you are employed and unable to work, your employer should pay you Statutory Sick Pay (SSP) for a maximum of 28 weeks. You may be able to get working tax credit during this period.

Depending on your income and on how much National Insurance you have paid, you may be able to claim Employment and Support Allowance (ESA). This is paid at a basic rate for the first 13 weeks. During this time you will have to take part in a ‘work capability assessment’ and attend a work focused interview. After the 13 week period you will be assessed and placed into one of two groups: the support group or the work related activity group. Basically, they are trying to see if you could carry on working. It is not as harrowing as it sounds and well worth the trouble.

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Being self-employed still entitles you to ESA as long as you have paid the correct level of National Insurance contributions.

If you are not able to work because of illness it is important to ask your GP for a medical certificate for the time off work. If you are in hospital, ask your doctor or nurse for a certificate to cover the time that you are an inpatient.

Disability Living Allowance/Attendance Allowance (DLA) You will need to have either long term (over nine months) or permanent disability to qualify.

Money Myth: Working disqualifies you from DLA support This allowance is designed to help you look after yourself so you can claim even if still at work.

Read this bit carefully • If your cancer was caused as a result of your employment you may qualify for Industrial Injuries Benefits. You can ask for details from the Department for Work and Pensions • If you have a disability caused by your cancer or its treatment, you may be able to get further help such as special equipment put into your home (eg, ramps or hand-rails), bus and train concessions and a special key to give you access to toilets for disabled people. You can get details of these schemes from your local Social Services office • People with cancer can get free prescriptions, but you have to apply for an exemption card.

Ask your pharmacist for a form • The highly desirable Blue Badge for parking is sometimes available for those with mobility problems.

Outgoings Do you really need all those subscriptions, phones, TV channels? List all your fixed outgoings and see if any can be reduced or stopped. Keep the nice stuff if you can.

Mortgages can be the biggest outgoing. Chat with the bank, who let’s face it need all the customers they can get. You may be able re-mortgage to a lower interest

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rate, but watch out for arrangement fees, or switch to interest-only. Check out any insurance cover on your mortgage before doing this. Re-mortgage is not always straightforward because your credit rating may be reduced if you are no longer working. A great deal could depend on the value of the house and how much is outstanding. It never hurts to ask, and being honest over your health can tip the scales in your favour.

Most of us have debts on credit cards or store cards. Competition for your custom is intense and you may be able to swap these to companies with lower rates or negotiate lower repayments, although taking your debt elsewhere is viewed as a cash advance and you will be charged. Income from sickness policies might be used to reduce or clear debts.

Will power Perhaps not surprisingly, most people avoid making a will, but it is important. All manner of things can go wrong without one, not least when it comes to battles between people. You can now write your own will using a template off the web.

Some solicitors will also provide one for you to fill in.

Otherwise they can do the job for you.

Watch out for inheritance tax. The tax threshold in the year ending April 2010 is ÂŁ325,000 for single people and ÂŁ650,000 for couples. Your heirs may have to pay inheritance tax on anything over this amount. This is 40% and must be paid by them before any money is passed on. In certain circumstances, the amount paid can be reduced and you may want to contact your solicitor or financial advisor for advice.

Nominating life insurance policies and pension plans to named people can stop them becoming part of your main estate, which means that they are then not included in the sum on which inheritance tax must be paid.

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Caring for someone with cancer Although much of this book has been written for men who have had a diagnosis of cancer, it is recognised that it might be also be useful for those who are caring for them.

As a carer for someone with cancer, you have an extremely important role in helping to maintain their quality of life as you support them through this difficult time. There is no one right way to deal with living with cancer. You can only do what is right for you. In the same way there are no magic phrases, or approaches, which are the correct thing to say, or do, in all circumstances. Indeed, in this situation the important thing is not what you say but rather how you listen.

Caring can be very hard work, both physically and emotionally. If you have been caring for your partner, relative or friend for some time, you may already be completely drained. It can be easy to carry on, ignoring how exhausted you are, because you feel that only you can do what needs to be done. Asking for help can be difficult and may seem disloyal. Any support is valuable when you are feeling under pressure, especially the undemanding type that comes from family and friends. Asking for help is not a sign of weakness; it is more an awareness that problems can seldom be solved alone.

If you are at home looking after someone full-time, you may not have much chance to go out or spend time with friends. It may seem easier to stay in all the time, especially if the person you are caring for is very ill and needs a lot of attention.

However, it is very important to maintain contact with friends and make the effort to get out regularly. Alternatively, investigate respite care offered by hospices who will take over for a week or two to give you a proper break.

If you take good care of yourself it will help to keep your strength and spirits up. If you don’t want to take a break, then you can at least give yourself little treats such as: • Finding time to sit down with a cup of tea or a pint with mates or friends • Ensuring you have peace to watch your favourite TV programme • Having an early night with a good book.

Carers: your own health is important too It’s not easy if you are helping to look after someone who has cancer. You will have to cope with making sure your own needs are met as well as the person you are caring for. Caring means different things for every carer. What it involves will vary according to the needs of the person you are caring for and what you are able to do. Get information and practical advice to help you cope with issues ranging from the side effects of treatment and talking about cancer to managing your finances.

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Grieving and coping with bereavement Bereavement is inevitably upsetting and may occur at any age, even in childhood.

As we grow older, our contact with personal loss increases, but it may never get any easier to deal with.

Death in old age The loss of an elderly relative or friend is supposed to be less painful. People will attempt to console you with well-intended comments such as, ‘Well, she had a good innings’. Heads will nod, but a long innings often gives more reason to hope that death will never come.

Scale of misery Psychologists often refer to a scale that rates life events in terms of the stress they can cause. The death of a spouse or child comes at the very top.

The scale is useful because it helps to demonstrate how you may feel when you have lost a loved one. The stages of the ‘grieving reaction’ are listed below. While the order of these stages remains the same for almost everyone, the severity and duration of each will vary from person to person and there is no such thing as the ‘right way’.

Denial • ‘It can’t be true. There’s been some mistake’.

Anger • ‘It must be the doctor’s fault’.

Guilt • The next emotion, self-guilt, can be the most destructive. ‘How could I be so idiotic? It’s all my fault.’ People will find the most unlikely things with which to whip themselves unmercifully. This stage can last a long time, even when people rationalise the cause of their misery.

Acceptance • After a variable amount of time there comes a period of acceptance. There is no fixed time for this period, which can even depend upon the community. People generally will profess to have come to terms with their loss before they have actually done so.

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Coming to terms • Well-meaning folk will tell you that you’ll get over it. The truth is that you never ‘get over’ a major life event. What happens is that you come to terms with it; the pain diminishes gradually with time. It is not a smooth progression, however, and anniversaries, returning to places, or even casual mention of the person or some object or event will release waves of heartache.

Just to help me sleep People close to the recently bereaved can be so shocked by the effect on their loved one that they may ask for, or even demand, sedatives from the doctor.

Indeed, this used to be the norm, and there can be no doubt that drugs will numb the pain of grief. Unfortunately, grief will not be denied; and if it is not allowed to take its course with the support of friends and relatives, it will resurface after the drugs and the support have gone.

Cartoon to be colour

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People in grief then find themselves alone, but with the heartache they should have had when help was at hand. People often talk of such an experience as ‘floating above the events’ only to come down with a thump later on.

Effects underestimated Most people underestimate the effects of bereavement on a person, until it happens to them. The bereaved person often will not realise that loss of interest in job or family, constant pacing of the floor, spontaneous weeping or complete loss of appetite are all normal and common manifestations of grieving. People close to the bereaved person may also become impatient as time wears on, again underestimating the extent of the effects of grief and the length of time they can be felt. It is at this point that true friends are worth their weight in gold. To know when to leave the person alone and when to sit and listen, often to the same story over and over again without interruption, is a gift that few people have nowadays.

Bereavement can even affect the memory, and people will say they experienced a ‘complete blank’ for a period following the death. Almost every facet of life can be and is affected – only the scale and duration varies between people.

Thankfully, there are professional agencies specialising in bereavement counselling which can be contacted through your GP. Nobody pretends that strangers are as good as friends or relatives, but they can often help people who have difficulty coming to terms with their loss.

Points to remember: • • • •

People have different ways of expressing grief; there is no ‘normal way’ Talk about it, even if it hurts Don’t be afraid to seek support from friends, relatives or your doctor Aggression is natural, even towards close relatives and well-meaning neighbours. Doctors are a common focus of anger • Allow yourself time to grieve, and avoid drugs.

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Websites for cancer and men There’s a massive amount of material out there on the web, but where do you start sorting through it? The information needs of a newly-diagnosed patient are different from those of someone who’s had the disease for some time; the needs of a relative are different from those of a health professional.

So where do you begin to look for the information that you personally need? This section will help you to answer that question.

Search engine tips The web is like an enormous library, but although you’re permitted to take out most of the books, there is no index system to help you find them. At best search

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engines trawl barely a third of the resources on the internet, often a lot less. So while your preferred search engine may be quick, its results are no better than those of an assistant with reasonable knowledge of a small corner of the library.

To get the best out of a search engine, try to be specific. Use the ‘advanced search’ option if available. This may allow you to select only UK sites or only those updated in, say, the last three months. This is not necessarily because you are only interested in new information, but because you may well want to avoid dormant sites which are no longer being updated.

You aren’t restricted to searching for individual words. You can use quotation marks to search for specific phrases – for example, to search for “testicular cancer”. Also use + (plus) and - (dash/minus) to narrow down your results; note that the plus or minus signs must have no space after them. For example: ‘testicles +cancer’ will retrieve items that mention both testicles and cancer. The minus command might help if, for example, you wanted to find research by your doctor, the unfortunately named Dr Jekyll, but didn’t want to be inundated with Robert Louis Stevenson references. You could try “Dr Jekyll” -“Mr Hyde”.

A combination of the above can be very powerful indeed, enabling pinpoint searches. For example, “testicular cancer” +“Dr Jekyll” +“Belchester Bugle” could help you to track down that article your friend reckoned he’d seen in his local paper about your doctor and testicular cancer. This assumes, of course, that your search engine is aware of the Belchester Bugle website which, as we’ve already seen, is far from guaranteed.

Search engines do not all work the same way so a bit of trial and error is needed to work out how to get the best out of them. Some recognise certain short-cuts and not others. Search engines within a particular site – rather than a global search engine like Google – can be particularly frustrating as they have frequently not been built by search engine specialists.

How to approach the internet The internet is a resource that can help you get the most from a consultation with a health professional. It is not a substitute for a professional consultation. These websites are listed for information only and neither the author nor the publishers can accept any responsibility for their content.

That said, don’t underestimate the value of the net. In a survey in the US in 2000, 70% of patients said that information they had found on the net had influenced their health decisions. Simply remember that if you choose to do so too, it is at your own risk.

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Contacts Malehealth.co.uk A useful starting point for a basic introduction to all male health queries including cancer.

Run by the Men’s Health Forum, Malehealth promises fast, free independent information for the man in the street. It’s the best starting point whatever your male health query. Editor Jim Pollard knows a bit about living with cancer as he’s had Hodgkin’s disease, a lymphatic cancer, which he wrote about in his book All Right, Mate? There are sections on many of the common cancers, including the male ones, and an introduction to cancer in general, all written in an easy to use Q and A format. The site is also packed with information on cancer prevention.

Website: www.malehealth.co.uk CancerIndex A useful starting point for a more specific enquiry from those who already have a basic knowledge.

This started in 1996 as the pet project of statistician Simon Cotterill and has snowballed since then. It’s an incredible set of links to cancer resources on the web by disease type and treatment. Looking up a particular type of cancer will yield a list of organisations and other resources on the web. But take note of Simon’s disclaimer: the content is maintained on a voluntary basis for information only. Beware also: a search will throw up sponsored (paid-for) links first while those specifically generated by the site appear below.

Website: www.cancerindex.org CancerHelp UK CancerHelp UK is a free information service about cancer and cancer care run by the major research organisation Cancer Research UK. It aims to provide information on both prevention and treatment.

Website: www.cancerhelp.org.uk DIPEx (Database of individual patient experiences) You can share your experience, ask questions, and pass on advice to others.

Website: www.dipex.org/community Macmillan A useful starting point for reading about others’ experiences of cancer.

Macmillan run what they call a Cancer Information Centre online. It includes access to various publications produced by others, information about Macmillan’s local support groups and the opportunity to read other people’s stories about cancer including patients, families and friends and health professionals.

Website: www.macmillan.org.uk/cancerinformation

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World Cancer Research Fund A useful starting point for advice on diet to prevent cancer.

The WCRF is the only major UK registered charity dedicated to the prevention of cancer through healthy diets and associated lifestyles. If you’re interested in cancer prevention the content is rock solid.

Website: www.wcrf-uk.org

Other general sites Cancer Specialist Library (CSL) The Cancer Specialist Library (CSL) is one of the NHS’s collections of specialist libraries within the National electronic Library for Health (NeLH). Covers the more common cancers in detail. Most useful for health professionals.

Website: www.nelc.org.uk Institute of Cancer Research The Institute of Cancer Research’s patient information page provides links to the widely-respected Royal Marsden Hospital and its patient information section, and to the ICR’s own section providing an introduction to male cancers – Everyman.

The Everyman section is at www.icr.ac.uk/everyman Website: www.icr.ac.uk/cancerinformation.html Bandolier UK site focusing on evidence-based health care. Requires a certain amount of prior knowledge to be used effectively, but can be helpful for cutting through the many opinions and finding out what the published evidence is.

Website: www.jr2.ox.ac.uk/bandolier/index.html NHS Choices Working closely with NHS Direct, it supplies an enormous amount of good quality information and tips.

Website: www.nhs.uk MedlinePLUS Comprehensive general health site built around information from the world’s largest medical library, the USA’s National Library of Medicine. The encyclopaedia section includes pictures and diagrams.

Website: medlineplus.gov OMNI OMNI is a UK gateway offering free access to a searchable catalogue of internet sites covering health and medicine. Possibly most useful to well-informed search engine wizards.

Website: omni.ac.uk

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American Cancer Society The main US cancer organisation. Includes a facility for asking questions by email.

Website: www.cancer.org People Living with Cancer This is the patient information site of the American Society of Clinical Oncology.

Website: www.peoplelivingwithcancer.org Association for Cancer Online Resources US-based, ACOR describes itself as the ‘online helpline’ for people affected by cancer. Includes information, mailing lists and discussion forums.

Website: www.acor.org

Specialist sites Beating Bowel Cancer Website: www.beatingbowelcancer.org Bowel Cancer UK Website: www.bowelcanceruk.org.uk Colon Cancer CC is the UK’s leading national charity dedicated to reducing deaths from bowel cancer – also known as colorectal cancer – and improving the lives of those affected by the disease.

Website: www.coloncancer.org.uk Orchid Cancer Appeal Formed in 1996 by former testicular cancer patient Colin Osborne, the charismatic Orchid Cancer Appeal was the first registered charity dedicated to funding research into diagnosis, prevention and treatment of testicular, prostate and penile cancer and to increasing public awareness of these diseases.

Website: www.orchid-cancer.org.uk Prostate Research Campaign UK Set up in the early 1990s, the Prostate Research Campaign UK charity deals with all prostate problems, not just cancer.

Website: www.prostate-research.org.uk The Prostate Cancer Charity Set up in 1996, the Prostate Cancer Charity funds research and provides patient information. It includes email support from nurses and message boards for men to share experiences.

Website: www.prostate-cancer.org.uk Roy Castle Lung Cancer Foundation Website: www.roycastle.org UK Prostate Link Website: www.prostate-link.org.uk

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Taking care of your health