FAQs
- What is a Clinical Trial
?
Cancer Specialists world wide are constantly studying the effects of various treatments in order to improve the quality of cancer treatments and to improve survival rates. This type of study is called a clinical trial or study. Each trial or study is designed to answer specific questions about specific cancers.
If you are asked to take part in a clinical trial it will be fully explained to you before you decided whether you want to take part or not.
- Will I be able to get Insurance in the future?
A lot of people worry that they won’t be able to get insurance in the future. Each person’s application for insurance is treated on their individual circumstances such as how long ago you had the cancer, what type of insurance cover you are looking etc. The best thing to do when you are looking for insurance is to contact a few companies and get a number of quotes and compare them. Remember most insurance companies are keen to sell.
- Will I lose my hair?
Chemotherapy drugs are very powerful drugs used to treat cancer. Because they are so strong they can have other affects on the body besides killing the cancer cells. These are known as side effects. One of the side affects associated with some chemotherapy drugs is hair loss. Hair should grow back about 6 weeks after treatment ends. But not all chemotherapy drugs have this side affect and you should talk to your nurse or doctor to find out if this is one of the side affects associated with the drug you are taking.
If you are having Radiotherapy treatment hair will only be lost from the part of the body being treated. Radiotherphy is very strong and sometimes the hair does not grow back. The radiotherapist will try to avoid this as much as possible and to limit this effect if permanent hair loss is likely. If you are concerned about this talk to your radiotherapist, doctor or nurse.
Have a look in the About you section for more information and tips on how to deal with hair loss.
- What is a Hickman Line?
Because of the need for frequent blood tests and drugs and fluids during your cancer treatment it is likely that you will have a Hickman line, or Portacath inserted so that blood samples can be taken and drugs and fluids given. This means that you don’t need to have a needle inserted each time. Hickman lines, PICC line or a Portacath are tubes put into your vein and are left in while you need them. A Hickman line can stay in for a long period of time. A Portacath can be left in place for up to a week while it is needed. If you need to have a Hickman or Portacath inserted your nurse will explain it to you and answer any questions you may have.
- Is there anything that can slow down the muscles getting weaker?
Muscular dystrophy is a progressive disease; this means that as time goes on the muscles with get weaker. But you can help to keep yourself flexible and well, by doing stretching exercises, which your physiotherapist will show you. These stretching exercise help to keep you flexible and help to avoid getting stiff and sore.
- Is there a cure?
Unfortunately, at present there is no cure, but scientists around the world are working very hard to try and find a cure or therapy for muscular dystrophy. However, it takes a very long time before a treatment is allowed to be given to patients. Doctors and scientists need to put them through very strict tests to make sure that the treatment or therapy does what it should and if there are any nasty side effects that could make things worse.
- What causes muscular dystrophy?
You may have heard about genes, these are the building blocks for us, they determine what colour eyes with have, what colour hair we have, what height we are, what colour our skin is and much more. In muscular dystrophy one of the many genes that make us up has a fault.
- What is a genetic disorder?
A genetic disorder is a disease that is caused by an abnormality in an individual’s DNA. Abnormalities can range from a small mutation in a single gene to the addition or subtraction of an entire chromosome or set of chromosomes.
- What is muscular dystrophy/neuromuscular disorders?
Muscular dystrophy or neuromuscular disorders is the name used to describe a group of conditions, which causes a gradual loss of muscle size and strength. This means that over time the muscles become weaker and it becomes more difficult to carry out tasks and actions such as walking. Muscular Dystrophy doesn’t affect other abilities such as hearing, seeing, taste and speech.
- Where can I get more information and advice?
The Muscular Dystrophy Campaign has a web site that is dedicated to muscular dystrophy conditions. It has lots of information on many types of muscular dystrophy as well as practical information on daily living issues. There are also contact details if you need to get in touch with someone. There is a link to the muscular dystrophy web site on this site. And don’t forget your specialist healthcare team, who have great experience and who would be happy to answer your questions and listen to your concerns. Other family members like your mum and dad may be able to help you find out more as well so why not include them in your journey to find out information they may learn something!
- Even though I don’t have muscular dystrophy can I pass it on to my children?
To answer this question you need to understand what a carrier is and how the faulty gene for muscular dystrophy is passed on. A carrier is a person who has the faulty gene but does not suffer from the condition.
In one type of muscular dystrophy, Duchenne muscular dystrophy only girls who are carriers stand a chance of passing the condition on to 50% of their male (boys) children. Boys who have the condition never carry this type of muscular dystrophy to their children. When boys with Duchenne muscular dystrophy become dads none of their male children will be affected but all of their girls will be carriers. In some other types of muscular dystrophy both boys and girls stand a chance of passing it to their children if they have a partner who is also at risk, which is very rare. Don’t panic if you are not sure what this means for you. When you feel ready it can be arranged for you to speak to a specialist known as a genetic counsellor. They should be able to explain this to you and help to work out the possible risk of this for you personally.
- Can I afford to go to college?
Many young people thinking about going on to further education worry about this. Depending on your family income, grants are available from your local Education Board to help with fees and living expenses.
- I feel that I can’t show people how I feel as I am now the man of the house and have to be strong for my mum, younger sisters and brother.No child or young person should feel that they have to be an adult but sometimes grown ups don’t realise that this is how you feel. You need to talk about your difficult feelings and cry if you need to cry. You can talk to someone you trust about your feelings.
- I feel guilty when I am enjoying myself, and angry with my friends for not having to feel this way.
Many people feel guilty for laughing and enjoying themselves after someone has died, but you cannot be sad all of the time and need to have time out from painful feelings. It doesn’t mean you didn’t love them and they wouldn’t want you to feel guilty or stop having fun. You may sometimes feel angry with friends who have not lost someone close to them the way you have and it can be normal to feel this way. Just remember this isn’t their fault, and try to work through these feelings in a safe and healthy way, talk to someone you trust.
- I feel so sad all the time; will I always feel like this?
No, over time you will begin to feel better, this doesn’t mean that you don’t care about the person who has died or that you have forgotten them. A time will come when you will be able to remember them and the happy times you had together without feeling so sad. You don’t have to go through this sadness all alone, if you don’t feel you can talk to someone in the family there are many organisations that are experts in helping people when someone important to them has died. Contacts for these organisations can be found on the links page.
- I feel angry with my mum for dying and leaving me, why do I feel this way?
It is normal to feel angry when a parent or another important person has died. It is important to talk to someone you trust about your feelings and to find a safe healthy way of managing difficult feelings, for example playing a sport, take up trampolining or even hitting a pillow!
- I’m afraid that I won’t remember them, as time goes by, is there anything I can do to help me remember?
Yes, there are lots of things that you can do that will help you remember them. Memory boxes are a good way of doing this. Collect photographs, birthday cards, may be you have a small present that the person who has died has given you, or a little something that was special to the person. You might even want to include a pressed flower that was their favourite kind or a pebble from a beach where you shared a walk. Anything that has a special meaning for you and the person that died can go in the memory box. Or even a memory book that you can put in photographs and write your favourite memories of the person in is a good idea. You could also talk to others and write down their memories of the person as well. These are both good ways of storing your memories that you can use to help you look back and remember.
- I was always arguing with my dad before he got sick, is it my fault?
Most teenagers argue with their parents, it’s a normal part of growing up. It is never anyone’s fault, and nothing anyone can say or do good or bad can cause cancer in another person.
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