Knowing you have a tumour
When you are told that you have a brain tumour you may feel frightened, unreal, angry, numb, shocked. All these feelings are normal. Try not to bottle up your emotions. Talk to your family and your friends. They, too, will be upset to know that you have a serious illness. Together, by talking about it, you will support each other and gain strength.
Remember you are not to blame for your illness. It has not been caused by anything you have done, and you could not have prevented it.
Everybody will have their own special worries about their illness. You may have family worries, you may be a parent of young children, a student beginning a college course, looking after a dependent elderly parent, getting married, you may have concerns about driving your car or your job. It will seem as if the bottom is dropping out of your world. Talk to the professionals in the hospital, tell them about your personal worries and circumstances. They may be able to reassure you, and put you in touch with others who can help.
Remember that the professionals are there to help you.
Telling your family about your illness
You will be upset at having to tell your husband, wife, children or a dependent parent about your illness. You may think that you should shield them and not tell them the truth. But try to be honest, explain that you are not well and will need treatment. Reassure them that there will be people to help you all. The social worker at the hospital, or the community nurse, may help you to break the news to your family if you feel that you cannot do it yourself and have not got a close relative or friend to help you.
If you have children to look after, or an elderly parent, you may need to make arrangements for their care while you are in hospital and having your treatment. Always accept the help offered by family, friends and neighbours. They will want to help, so let them do your shopping, washing, ironing or fetching the children from school or do some cooking. Try not to make yourself over-tired and fraught by being too independent.
If you have children at school
Let your children’s head teacher and class teacher know that you are ill and needing treatment. They will then understand and be able to help if your children are upset at school.
Driving your car
Sometimes a brain tumour will cause seizures or epilepsy. You may have already experienced these. Although seizures can be controlled by drugs, it would be dangerous for you and for other people if you drive your car. You should notify the DVLA (Swansea) and your car insurance company about your illness and you will have to give up your licence. The DVLA will then determine whether or not you will have to surrender your licence and, if so, for how long. You will understandably feel upset and even angry about this. But remember that the rule is to protect you and other people from an accident if you should have a seizure when you are driving.
Finding reasonably priced travel insurance is a common problem following brain tumour diagnosis. Prices and criteria can vary widely, but some companies are certainly more sympathetic and approachable than others. Our Insurance Company list may give you some options worth exploring.
If you work you should tell your employers about your illness. This will be to protect you and other people if you feel unwell or have a seizure when at work. Your line manager, or your HR department should be aware of your condition and may be helpful in offering more flexible hours if you need time off for hospital appointments.
When people are ill they often get tired and low. You may sometimes feel very sad, moody or even angry. This is normal. Your family, too, may have these feelings, because they are also tired and worried. Talk to each other about your feelings and try to accept them. Think of ways to help each other to cope with them. Joining a Support Group can be very beneficial. The group will help you to cope with some of the problems which your illness can bring. Take a look at our Support Group page to see if one of our groups meets near you. If you're outside the regions we work in, we can always advise you of Support Groups in other areas of the UK.
Try to set aside some part of your day when you can be quiet and have time to think. Having a brain tumour and needing hospital treatment can suddenly mean that you have little time for yourself. Your hospital appointments, meeting the staff at the hospital, friends and neighbours calling in, can mean that your life suddenly gets very busy and exhausting. Try to continue any quiet interests you had before your illness, such as listening to music, sewing, gardening, reading. It is important that your privacy does not get swallowed up by your illness.
Talk to your family doctor. A family doctor is there to advise and support you and your family. They will not be involved in your treatment, but will be kept informed of your treatment and progress by the hospital doctors.
You may be entitled to a variety of benefits. The rules on benefits are always changing. Ask a friend to collect the latest benefit leaflets, or check online (www.direct.gov.uk and search for DLA or www.carersuk.org). The Social Work department in the hospital will also have up-to-date information on benefits.
Some examples of benefits are:
Disability Living Allowance
Employment and Support Allowance
Remember to seek early advice so that you do not lose out on the benefits to which you are entitled.
Paying for prescriptions
Prescription charges for cancer patients were abolished on April 1 2009.
Patients being treated for cancer, including the effects of cancer or the effects of cancer treatment, can apply for a medical exemption (MedEx) certificate. If you have cancer ask your doctor for an application form. This will need to be countersigned by your GP, hospital or service doctor (or, at your GP’s discretion, a member of the practice who has access to your medical records).
Arrangements for all other NHS charges remain unchanged.
Information from the Citizens Advice Bureau (CAB)
If you are in any doubt about what help is available, go into a local CAB office, or get a friend to go for you, and ask their advice. They will do all they can to help you with information about benefits, disability services, the NHS, local borough services, driving and insurance.
Help from your local Social Services Department
If your illness causes any disability you may be eligible for help in your home from your social services, such as Home Care Assistance. They may also provide you with aids in the house, such as a bath rail or a ramp at the front door. Get in touch with your local social services department to find out what help you are entitled to.
Hospital ambulances are usually only available to patients who are too poorly or disabled to use any other form of transport for their hospital appointments. If you have any worries or queries about how to get to and from the hospital always go to the out-patient enquiry desk and ask their advice.
Some boroughs have a minibus scheme called Dial-A-Ride which may be able to take you to shops or to visit friends, if you are unable to use your car or public transport because of disability or physical weakness. Dial-a-Ride will not, however, take people to hospital appointments. Find out your local Dial-a-Ride phone number and see if you can get their help.
Some boroughs have a volunteer bureau which may find you a volunteer who will act like a friend and help you with shopping, or exercise your pet, or stay with you for an evening if you are on your own. A volunteer can be very helpful if you have not got local friends or family. Your local CAB will be able to put you in touch with the local volunteer bureau.
Help from Marie Curie or Macmillan nurses
These are two charities which help cancer patients in a variety of ways. They may visit you at home and give moral support and practical advice. If the person you live with has to go out for an evening and you do not like being on your own the Marie Curie or Macmillan nurses may arrange for somebody to spend the evening with you.
Your rights in the NHS
Remember that all NHS patients have a right to dignity, respect and privacy. It is sometimes difficult to understand the NHS and to know what you are entitled to, but the following are some of your essential rights:
You have a right to be given clear information about treatment, including any risks and alternatives.
You have a right to seek a second opinion about your diagnosis. If you decide to do so it would be sensible to get it organised as soon as possible, because it is not wise to delay your treatment.
Research is always going on into new treatments for patients with brain tumours. Some patients may be asked to participate in new treatments or drug trials. You have a right to refuse to participate in research. Your decision will not affect your quality of care and treatment.
You are entitled to see your medical records if you wish to do so.
Waiting time at clinics
You have a right to be seen near the time of your appointment. Hospitals sometimes have sudden emergencies and shortages of staff, which cannot be helped, but you should always receive adequate explanations if there are any long delays.
Religious and cultural beliefs
You are entitled to have your religious and cultural beliefs respected: for example, any wish relating to preparation of your food, the availability of interpreters, visits from religious representatives, and privacy according to your sex.
The NHS and PALS
To find out more about how the NHS works and about your local NHS services, visit www.nhs.uk.
The NHS Plan was introduced in 2000 and sets out the concept of the Patient Advice and Liaison Service or PALS.
PALS has been designed as a means of providing on the spot help for patients within all trusts, including acute, mental health and primary care trusts. PALS is visible and accessible through a number of means. For example, situated in main hospital reception areas and primary care settings. The service is advertised locally and can be accessed through free-phone numbers.
PALS is employed by and responsible to the trusts. Their job includes: provision of information to patients, carers and families, about health and health services locally; resolving problems and concerns quickly, before they become more serious; informing people of the complaints procedure, and putting them in touch with specialist, independent advocacy services when they wish to complain formally; acting as an early warning system for Trusts and Patients’ Forums; and operating in a network with other PALS in their area, to ensure seamless service for patients who move between and use many different parts of the care system.) Contact your local or strategic Health Authority for specific PALS contact information.