|
Brain tumour
A guide for patients and carers
How will life be affected
Driving
Having a brain tumour is likely to affect your right to hold a current driving licence. You are legally obliged to notify the Driver and Vehicle Licencing Agency (DVLA) of your condition and must not drive until you have DVLA approval. This organisation is located in Swansea and the address may be found at the end of this booklet.
Special driving regulations for those who have had a brain tumour are imposed by the Medical Department of the DVLA and can be summarised as follows: People who have or have had a brain tumour are required by law to give up their licence, and failure to do so will automatically invalidate their car insurance.
The DVLA, after liaising with the person’s GP or specialist, will decide the period of time for which they will be unauthorised to drive. The decision will almost certainly be based upon an up-to-date scan, along with an assurance from the doctor that the tumour is unlikely to cause further symptoms that might affect the ability to drive. In the case of a malignant tumour, a longer ban is likely to be imposed so as to be sure that the tumour remains inactive. Someone with a history of seizures will not be permitted to drive until the seizures have stopped for a suitable period of time. Public Service Vehicle or Heavy Goods Vehicle licence holders are more likely to have these permanently withdrawn.
Once the agreed period of time has passed, you can get your licence back after passing a medical in which your vision and ability to control a vehicle – sometimes with the aid of suitable modifications – have been tested. It may well be worth obtaining several competitive quotes from insurance companies at this time as some are known to increase rates in these circumstances.
Your new licence will probably be issued for a two-year period, after which you must re-apply. You can re-apply before your existing licence expires, which should minimise any inconvenience.
More detailed information can be obtained by contacting the DVLA direct. It is worth making this contact as early as possible, as your new licence can take a while to process.
Sport
Most sports can be safely started again once you have recovered, although contact sports that may involve blows to the head should be permanently avoided. These include rugby and boxing.You should ask your specialist if you are worried.
Swimming
This is encouraged once the wound has healed, but you should not swim unsupervised until the risk of epilepsy has passed, which is approximately one year.
Flying
You will usually be allowed to fly after three months, although you may experience headaches during landing and take-off due to pressure changes.
Sexual intercourse
Sex is safe, although women are advised to avoid pregnancy for the first six months. A brain tumour in itself does not affect fertility, but some forms of chemotherapy do, and you should ask your doctor about this if you are concerned. If you are planning a pregnancy, discuss this with your medical team.
Drinking
There is no reason why you shouldn’t drink alcohol, but it is advisable to drink a little less because you are likely to be more susceptible to its effects. There is a risk of provoking a fit if some people get badly drunk. Some people complain of more severe hangovers if they overdo it.
When can I return to work?
Having a diagnosis of a brain tumour does not mean that you have to give up work, although you will need to take time off during treatment and recovery after surgery. The timing of your return to work will depend on what kind of job you do. You may need to wait for the return of your driving licence and you will certainly need sufficient physical and mental energy. The best guide is common sense, i.e. go back when you feel capable, but you can always discuss this with the social worker attached to the unit where you are treated. Many people return on a part-time basis and then increase their hours. Most feel better once they have returned to work as this is a major step in getting back to normal.
Be reassured that if you have a particularly busy day, the worst that will happen is that you will become tired more easily. Overstimulating the brain will not bring the tumour back.
If you suffer from seizures, you should not work at heights or with dangerous machinery.
Tiredness
Tiredness is a very common symptom following any serious illness, particularly if someone has had surgery or is undergoing a course of radiotherapy. In addition, tumours in certain parts of the brain may specifically leave you feeling tired and can delay your return to work.
If you are having problems coping at home, ask your doctor, physiotherapist or social worker for advice. They will be able to arrange for a range of services at your home, including an assessment by an occupational therapist. These are people who are expert at working out what your needs are so that you will be able to live as independently as possible.
Should I contact a Macmillan nurse?
Discuss how appropriate this is with the team looking after you. The Macmillan nurses usually only deal with people affected by malignant tumours. The address of the organisation is given at the end of this booklet.
What practical help and benefits are available?
If you are having, or think you might have financial problems because your work is being affected, you may find you are eligible for several different payments.
There is very likely to be a social worker attached to the unit where you are receiving treatment.Whatever your financial position, you would be well advised to talk to them as soon as possible.
Coping
It can be very difficulty coping with the diagnosis of a brain tumour both emotionally and practically. The first few weeks and months can be a very intense time and you may find that you are very emotional and angry.You may also notice that friends and family treat you differently for fear of upsetting you. It is natural to feel shocked and uncertain about the future and many people worry that they may die. This is a normal worry but unfortunately it is a very difficult question to answer. Brain tumours can make you very ill but they can also be controlled successfully for a long time.
Everybody has different ways of coping – you may find it helpful to talk to someone about your thoughts and feelings. If you feel uncomfortable talking with your friends and family about any issues connected with your diagnosis, you may find it easier to discuss it with an independent person, such as the Brain and Spine Helpline or one of the other contacts in this booklet.
What should I tell my children?
It is usually best to be as honest as possible although this is often difficult, even if your children are grown up. Younger children won’t understand what is going on, but will obviously be distressed if you go into hospital without telling them, so you should certainly warn them and explain to them what happens when you have an operation. That way, they will accept what happens more easily.
If you have been told by your medical team that it is very likely that you will die, then however painful it may be, it is usually better to discuss this with your children. You could begin by talking about what happens after life, or they may have known an elderly relative who has died, which will help them to understand. They will be upset and sometimes angry, which is understandable. This is likely to be the most difficult thing you will have ever talked to your children about, and you may feel you are protecting them by not telling them. But being able to share their feelings and thoughts with you and with family and friends will help them to cope. There are no easy answers or hard-and-fast rules, and in the end the decision rests with you and your family. Your medical team and the support organisations who work in this area will be happy to discuss with you when and how best to approach this issue.
|
Page 8 of 10
