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Information Packet


After Diagnosis

After Mesothelioma Diagnosis

"I can't believe it. It can't be true."
Feeling shocked is often the first reaction when mesothelioma is diagnosed. You may
Feel numb and not believe what is happening
Be unable to express any emotion
Find you can only take in small amounts of information
Ask the same questions or need to be told the same thing over and over again
Needing to have information repeated is a common reaction to shock.

Some people may find their feelings of disbelief make talking about their illness with family and friends difficult. Others feel the urge to talk about it as a way of helping them to accept the news themselves.

"Am I going to die?" "Will I be in pain?"
The first thing people ask about having mesothelioma cancer is: "Am I going to die?"
Remember - Mesothelioma patients can live for many years.
Mesothelioma clinical trials provides new hope. Today, many things can be done to help with any pain or discomfort or to slow the cancer down. (Look in Treating Pain Section for more information).

Many people are worried about their treatment and whether it will be very unpleasant. Remember that research into making treatments easier to cope with, and reducing and controlling side effects has been going on for years and will continue. Stories you hear about people being treated years ago will be out of date. It is best to talk to your doctor about your treatment before relying on rumor or other incorrect information.

"There's nothing really wrong with me. I don't have mesothelioma."
Some people choose to cope with their situation by

Not wanting to know anything about their mesothelioma cancer
Talking about it as little as possible

If that's how you feel, tell the people around you quite firmly that, for the time being, you don't want to talk about your illness.

But sometimes you may find it is the other way around. Your family and friends may

Deny your illness
Appear to ignore the fact that you have mesothelioma
Play down your anxieties and symptoms
Deliberately change the subject

These sorts of reactions may arise because people are frightened or embarrassed to talk about cancer, or because mesothelioma is such a rare form of cancer, they do not understand what it entails. Others may feel that if they don't talk about it, they can try to pretend it isn't happening. You may, however, want them to support you by sharing how you feel. If the reactions of others upset or hurt you,

Try telling them how you feel
Reassure them that you know what is happening
Explain that talking to them about your illness will help

Anger about your illness may be directed at

Those who are closest to you
The doctors and nurses who are caring for you
The companies that made the asbestos products and knew they were dangerous
God, if you are religious

You don't have to feel guilty about your angry thoughts or moods. But relatives and friends don't always realize that you are not angry with them but are angry with your illness. It may help to

Tell them this at a time when you are not feeling quite so angry
Ask them to read these pages, if talking is difficult

If you are finding it difficult to talk to your family, you may want to discuss this with a counselor.

Blame and Guilt
Sometimes in trying to find reasons why cancer has happened you may blame yourself or other people for your illness.

While asbestos exposure is the trigger, many factors must coincide to cause mesothelioma cancer. Chance plays a big part. Some people are more prone to developing a mesothelioma cancer because of their genes. Also, workers and other exposed to asbestos were never informed about the dangers; so there is no way that the average person could have avoided these dangers.

In addition, many experts believe a single tiny strand of asbestos is sufficient to trigger mesothelioma, which with the widespread use of asbestos, is impossible to avoid. Finally, you had to work to earn a living and provide for your family - that was not a choice. Nevertheless, it may be difficult to avoid blaming yourself, but talking about these feelings helps.

Why Me?
Having mesothelioma cancer can make you feel cross with people who are well. Why should this have happened to you and not to someone else? You may feel

Bad tempered

These feelings may crop up from time to time throughout your illness and treatment. Relatives may also be angry that your illness interferes with their lives.
It helps to express your feelings openly. Bottling it up may upset everyone.

Leave Me Alone
There may be times during your illness when you want to be left alone to sort out your own feelings. This can be hard for family and friends who may not understand how you feel, and want to share this difficult time with you. You can make it easier for them by telling them that

You don't feel like talking about your illness now, but you will talk to them when you do
You still care about them even if you do not want to talk about your illness

Depression is often triggered by a diagnosis of mesothelioma. You might not be able to think clearly or do things, or you might not want to get up in the morning. You may want to talk to your doctor or nurse who can

Explain to you that these feelings are common with mesothelioma patients
Prescribe a course of drugs that may help you
Refer you to a doctor or counselor who specializes in the problems of cancer patients

It is quite common for people with cancer to feel depressed, so don't feel you are different if you need to ask for help.

Positive Thinking
One of the things that people with mesothelioma are often encouraged to do is to "be positive". But that is not that easy. Living with mesothelioma and its treatment can be frightening. There will be times when you may feel low and fear for you future.

Most people with mesothelioma cancer are frightened about how they might die and what will happen to their families if they do die. There are obviously very trying emotions, and it is very difficult to "just take it your stride". Friends and family, however, may advise you to think positively. It may help to remember that being positive

Doesn't mean being cheerful and optimistic
Means recognizing some of the fearful possibilities that arise from having mesothelioma cancer

Nobody should expect you to feel good when confronting fear.
Being positive and thinking positively can even include

Feeling upset
Feeling frightened

Such feelings can be a sign of strength - and may reflect your courage in facing up to an uncertain future.

Being positive may include expressing your full range of emotions. It is, perhaps, more about being able to balance the bad with the good, and not allowing negative emotions overwhelm you.