Being diagnosed

When You're Told the News

I thought a tumour was something that just had to be removed and I’d be fine within a week. When the word cancer was finally used, I was scared and confused... it felt like it wasn’t happening to me but a character in a movie I was watching. Emily.

I felt anger, fear, shock and sorrow all at once. I know my family were worried and scared for me but I don’t think they thought for one minute I was actually going to die. Jim.

I never believed or understood how serious it was. I thought, a tumour? They can cut it out or something. I just wanted them to operate to get the thing out of my head. I was too sick to think. Jonathon.

My reaction was pretty subdued. I wasn’t really surprised or shocked at all. My family was devastated, but my mom especially was strong and refused to get discouraged, which is probably a big part of how I was able to deal with things. David.

I screamed I was so upset. I asked twice if I was going to die and their answer was, ‘We don’t know’ which made me worse. I thought, ‘What have I done? Why me?’ Now I feel lucky to be alive. Vicki.

When I was told, I did not react. My family were the ones who showed emotion. I was almost lost in my own thoughts. I remember sitting at home on my own that night and literally pinching myself hoping to wake up. It took many days before I had feelings. Simon.

Unfortunately, there is every chance that as soon as a doctor has told you that you have cancer, you are not given time to go home and think about it and get used to the idea before the next things happen. Events scoop you up, usually starting with immediate hospital admission. And this may not even be in your local hospital – you may be sent by ambulance to a specialist hospital that will involve family and friends travelling further to see you. Kevin, for example, was in a hospital 120 miles from home. His mother came to stay with him leaving his sister, Alisa, behind, very much on her own as she had school to attend - their father was frequently away with his work. Vanessa had to leave her home country for treatment, splitting up her family.

I found out I had cancer at home in Anguilla, which is British, in the Caribbean but they didn’t have the facilities to treat me there. Three people a year are allowed to come to the UK for treatment and I was one of them, so we had to move abroad. The Government paid our expenses in coming over, and my mom stayed with me in the hospital where I was being treated. My brothers and sisters joined us after. Although we are not living in the hospital now, we can’t go home because I have frequent check-ups. I hope to go back in a couple of years, but it depends on how often I still need check-ups. They can’t do them at home. I miss my half-brothers and half-sisters that were left behind from my dad’s first marriage; he died before I came to England. Vanessa.

Ask questions

One of the first questions young people ask when they hear they have cancer is related to their appearance.

The orthopaedic oncologist I was referred to thought I knew I had cancer. So when he started referring to my tumour my parents and I had to do a double take. ‘Wait! What??? Tumour??’ I learned that I’d have chemotherapy soon. I stopped him there. ‘Will I lose my hair?’ Hair was tangible, cancer was not. ‘Yes,’ he’d said. And then I started crying. Aubrie.

But once you take in the seriousness of your situation, you will realise that there are many other questions to be asked. Hair can grow back, but other things that happen to you may be permanent. Be informed about your type of cancer and how it is expected to develop. It can sometimes be easier to deal with a known and understood enemy than a mystery one. Some people supplement the information they get from their oncologist with research of their own – or of their parents’.

Jason searched on the web for all the information he could find on his cancer: how it was treated, what his options were, what hospitals were ranked the best, where the chemo treatment would be done, etc. He went and checked out the facilities and talked to doctors before making a choice on where he was going for treatment. He even went so far as to check what type of drug they would use to anaesthetise him. He wanted to make sure he could continue scuba diving and not have long-term affects from the drug. Ardis.

My dad looked up everything on Ewing’s sarcoma that he could find on the Internet. He wanted to be prepared. Emily.

Many people can’t absorb what they are being told – they may be bewildered or in shock, or need longer than they are given to assimilate everything. Doctors and nurses understand this and won’t mind you asking the same question again – and again, if necessary. Always have someone with you for your appointments (even if you are adult) and take a notepad and pen to write down what you are told – or ask someone to do it for you.

I saw the words on the paper and heard the words come out of their mouth, but I drowned it out. My parents were the ones asking questions while I was just in another land. Emily.

Have questions you want to ask written down so there is no risk of forgetting them. Ask about anything that concerns you – don’t be embarrassed, doctors are used to all kinds of questions. If you are shy and find this difficult, you will need to make an even bigger effort to communicate.
 

Friends finding out

You might not get the chance to tell friends yourself why you have suddenly disappeared from school, college or work – in which case, ask your parents, or someone else in your family, to let them know. You will certainly need the support of your friends over the next few months, possibly a lot longer, so the sooner they are in the loop the better. When you have good emotional support, it makes you stronger and more determined to fight.

A teacher got all my friends in one room and told them. My parents told other family members. Vicki.

My friends took it well. I said, ‘Hey, I have cancer.’ It was as blunt as that... and I know it surprised them but I didn’t understand what was really going on. I didn’t understand everything I would have to go through and it just seemed like something as small as a cut knee or a cold. Emily.

I was lucky to have a week at home before my treatment started. I invited all my friends over to my house. I just said, ‘It’s cancer.’ They were shocked but some had figured it out before I even said it. Then, for the rest of the day, we just had fun and forgot about it. It’s what I wanted – to pretend everything was normal. Sarah B.

For some people, the shock of diagnosis is so immense they are unable to talk about what happened for weeks. If this happens to you, explain to your friends that you’re happy to talk about anything but your illness. Tell them that you just want normal conversations about normal things – and for them to carry on treating you as they always have. So, if they were dead rude every time they saw you before, they have to continue being dead rude. Tiptoeing round you is not going to help.

All of my school friends but one avoided me; it was a very lonely time. If it wasn’t for my 6 brothers and sisters and my best friend treating me the same as always, I don’t know what would have happened. Although I’m now 43, and I still see some old school friends, they never mention my illness, despite my recurrences. My single faithful childhood friend has remained very close and I feel very lucky to have him as a friend. Jim.

Siblings finding out

There seems to be a divided camp with the reaction of siblings that are old enough to be of help. They can either ignore what’s going on or they can do their utmost to be helpful and encouraging.

My relationship with my twin sister, was a bit rocky when I found out I had cancer. We weren’t close, and we didn’t get along all that well, but we had the same friends, so we were always around each other. She went on almost pretending it wasn’t happening. She didn’t mean to be offensive; she just couldn’t really handle it. Emily.

I wanted to be the one who told my big brother. Soon after I said, ‘I have cancer’ he went off for a long bike ride. He came back with the best advice I could have received at that time. He told me that this was just a bump in the road, and nothing was to stop me from living. I was told sometime towards the end of my treatment that the attitude you have minutes after diagnosis sets the stage for how you will approach and undergo your treatments. I suppose that even though I saw my brother’s advice as a ‘turning point’, it was really just a confirmation of the attitude I had during diagnosis.
The day I was supposed to go in for my first chemo treatment, my brother arranged for two girl friends of his (who were also friends of mine) to pick up all of my girl friends for a little surprise party. How easily I forgot about my pain while in the company of my best friends, laughing! Aubrie.

Family life

Treatment may take several years and, during this time, family life can revolve around you and the hospital. This is not your fault and you should try not to feel guilty – and neither should your parents. Brothers and sisters may feel neglected, especially during a crisis of your illness or during crucial treatment times. Stress may make them withdraw from family and friends and start risky behaviour; younger siblings may have nightmares and become very anxious. Try to be understanding of life from their point of view – and remind other people that they too need care and attention.
Your parents are the rock on which you depend. Tell them to take care of themselves – by getting enough sleep and good food to eat - as being there for you will involve a lot of stamina. Taking exercise and having some time to themselves are also important. Suggest family friends or relatives sit with you sometimes to give your parents an occasional break. Encourage them to accept whatever help is on offer.

When I was having treatment, I had my friends, my family, other relatives, the field hockey team, and my church. They prayed for me, sent little gifts and cards and kept in touch with Mom to make sure we were both okay. The field hockey team took turns in making dinner for my family so my mom could put her time and attention into helping me. My dad only got lunch break at work and he would spend it with me. Emily.

It was a big help when people brought us food. Although full meals were usually brought, my mom thought it would be helpful if people would set aside single servings of whatever they’d had - I would get sick of everything I ate and it was difficult to create new dishes. Also, I’d get sick of the smell of cooking. There were also always fundraising events being put on for us so my parents didn’t have to worry about money – we could prioritise and focus on my health. Aubrie.

Having visitors

Ask someone to arrange lifts so friends can come to see you; you need their support and to keep in touch with what’s going on. If this isn’t possible, ask them to regularly make up a cassette of news. If you have access to a computer, you could chat online or just keep emailing.

Just coming to play a board game or two was something I enjoyed. Friends would also tell me about what was going on in the outside world or at school. Emily.

Cards, presents and phone calls were much appreciated, even though I rarely wanted to talk. It was just nice to know that others were thinking of me. Aubrie.

 The best thing people did was come to visit for short amounts of time and act as if I was back at home or hanging out or whatever, with nothing wrong. Friends visiting and acting normally was most helpful... I couldn’t, and still can’t, stand people asking me how I’m doing. David.

I hated it when people talked about me as if I wasn’t there. Sarah B.

There may be times when you don’t want to talk about your treatment – and times when that’s all you want to do. Sometimes you might just want to be left alone – and other times you might be desperate for company. Some days you may feel reasonably well and other days you may feel dreadful. Some days you may feel cheerful and optimistic and other days you may feel hopeless. Tell friends and family to expect you to be changeable. They should be prepared to go with it, whatever.

Sometimes, visitors can outstay their welcome. If you want company but know you will be too tired to stay awake or talk for long, ask friends to bring magazines or a book to read - they could also go for a drink or snack or browse the small shops usually found in big hospitals and come back for another chat after you’ve had some sleep.

I didn’t like it when friends came and stayed for hours and hours. If after the first dose of anti-nausea medicine I was still feeling sick, the doctors would give me something which would put me to sleep right away. I didn’t know how to tell friends to leave because I wanted to sleep. Emily.

People visiting always like to bring something: it makes them feel helpful and useful. Try to think of something you would like, especially if what they bring is something you don’t want.

I hated it when people brought me food. I never ate when in the hospital - just the look and smell of food made me very nauseous. Emily.

If you’re offered unwanted food, you could say, ‘It was very kind of you to make me something. I’m too sick to eat anything - would you mind if I passed it on to my parents? They don’t have time to cook much now.’

If asked what you would like, you could ask for magazines, books and tissues. Soap, shampoo, conditioner, shower gel and moisturisers made for sensitive skin are useful as chemotherapy affects your skin (see Chapter nine). Aromatherapy candles can help mask the smell of food when you feel sick. If you have access to a computer, you could ask for Amazon.co.uk or Amazon.com vouchers for books, CDs and DVDs. Some people might offer cash and then you can choose how to spend it yourself.

Beware of horror stories from other patients, friends and relatives. Stop them by saying, ‘That isn’t helpful’ or, ‘Please don’t frighten me with scary tales of other people’s medical problems’ or, ‘I don’t want to know of people who have died. It doesn’t help me stay positive.’

When visitors don’t know what to say, they often come out with comments that are not thought through such as, ‘You’re young and healthy. If anyone can beat it you can’ or, ‘You’re a fighter. You’ll make it’ or, ‘I don’t want you to die.’ Say, ‘Being young and healthy doesn’t guarantee surviving cancer’ or, ‘I may be a fighter but it doesn’t mean I’ll make it. And, if I don’t, does that mean I didn’t fight enough?’ or, ‘If you can’t stay positive how do you expect me to?’

Visitors can sometimes take the opportunity to unburden themselves when they come to visit. But you don’t need to be troubled with other people’s problems - you have enough of your own. So stop them by saying, ‘I’m sorry you’re having problems but I must ask you not to share them with me. I’m struggling to cope with getting through each hour and each day.’ You might also not want to be burdened with someone else’s tears or pity for you. If you can’t tell them, ask someone else to: ‘I’m sorry but it’s not a good idea for you to see X while you’re so obviously upset about her having cancer. It distresses her to see you cry.’

Living from day to day

Believe you will win over cancer; don’t let it control you. Cling on to your dreams and use them to help you through. Plan what you are going to do when you are cured – and believe that you will be.

Keep a dairy. It can be cathartic – allowing you to release your emotions without feeling guilty about upsetting friends and family. It can also remind you of how you felt during treatments, as you may have to go through them again. Then you can think – oh, I’ve had that drug before; it only made me sick for two days and then I was fine. The diary can also be a memento of your feat of surviving cancer and its treatment – or something to leave behind if you don’t make it. You might want to show it to a child of your own in the distant future. You might want to write a book about your experiences – or use it to help create a work of fiction.

Live life to the full now: you don’t know what’s in store for you, so you have to make the best of what you have each day. The rules of your life have suddenly changed; you can no longer take anything for granted.
Prepare yourself for treatment to help stop you dwelling on it. Many people say not to look at the awful colours of the chemotherapy liquids that drip into you – what can you concentrate on instead? Plan small treats so that you can enjoy something every day, even if it’s as simple as a lengthy hug with your mum or dad.

Take one day at a time. You won’t know what the future has in store for you; it’s too soon to say. So just try to go with whatever is happening and only consider the day you are in. Tomorrow’s worries can be thought of tomorrow. Think of your journey through cancer to be made up of many tiny steps. Travel using those steps; don’t try to leap them.

Don’t fight your body or your emotions. If you are in pain or very tired, accept it will be harder to cope with other things because of this: don’t expect too much of yourself. If you need to rest then rest; if you need to cry then have a good cry. Open your heart to those who care about you – and to anyone else in hearing distance! (Nurses and doctors are used to it.) Once you have released your emotions, try to find some peace until the next time pressure like this builds up. Don’t be afraid to laugh or make jokes – humour is very helpful.

Don’t forget you are a worthy person; don’t let cancer destroy your self-esteem - how highly you think of yourself. Being a dependent child again is hard to accept but independence can come back – you just need to be patient. Everyone needs a helping hand occasionally - it’s your turn this time. Be grateful for your parents, friends and siblings being near you and wishing you well. Bask in the comfort of their love.

If praying helps, then pray even if you were not particularly religious before you found out you had cancer. Faith can give you strength to see the hard times through. If you are not religious, believe in yourself and the healing power of your body and of the love of friends and family.

Sperm and egg banking

Cancer treatment can affect your fertility. When your life has only just begun, being sterile can be devastating – if not now, then later when you have found a partner you love and wish to have a baby with.

If you are male you may be given the opportunity to bank sperm before you receive chemotherapy or radiotherapy. Ideally, you should bank your sperm three times to give you maximum chances of having children later in life. This will probably be the first time in your life that masturbating is publicly approved and encouraged. You will be in a room with total privacy where videos, as well as magazines, may be available to help stimulate your imagination. Coming to orgasm can be very difficult as you may be feeling embarrassed and stressed because of the circumstances – and because your parents might be waiting the other side of the door for you to finish!

Someone asked me about banking sperm. I said naah! I’ll be all right. Besides, it was too embarrassing. I was a self-conscious 15 year-old. I suppose I regret it a bit but I reckon I could have kids. If not, I would adopt. People can be in perfect condition and still not be able to have kids. Jonathon.

Giving sperm was not a traumatic experience, just the responsible thing to do. Instead of walking out in shame, I asked the lab worker if I could take a look… So she brought me to the microscope to watch my little guys swimming around – pretty wild! Jason.

Although you might be a very young teenager who has not yet thought about having children, you never know how you might feel in the future; so letting such an opportunity pass you by could be a big mistake. If you believe masturbation is a sin, you won’t have much time to ponder over whether the circumstances excuse you - by the time you are admitted to hospital your treatment may be considered an emergency.

Unfortunately, it is unlikely that, if you are female, you will have the opportunity to bank eggs as it takes some time for hormone treatment to make your ovaries mature sufficient eggs to allow for donation. They have to be fertilised before being frozen and it is unlikely you have already found a life partner. However, there may be an opportunity for you to have some ovarian tissue removed before treatment, which is then frozen and put back in after your treatment is finished.

Clinical trials

You might be offered to take part in a clinical trial either at the outset of your treatment, or when standard treatment appears to be failing. In clinical trials, doctors need two groups. One group takes the treatment protocol under test, the other, known as the control group, takes the best standard treatment that is on offer at that time (and is usually the best result of a previous clinical trial). If the trial is what is called a ‘double blind’ trial, you and the people treating you, will not know whether you are in the trial group or the control group.

Taking part in a trial from the outset may either increase or decrease your chances of survival – you will have to discuss the pros and cons, and the possible risks involved, with the people treating you, and your family. Any drugs used will usually have already been tested on adults but because they affect cancer in young people differently and young people have different tolerances to adults, the drugs need to actually be tested on young people. It is through trials that treatment has vastly improved the chances of survival today – but the decision to take part must be yours.

If standard treatment fails, and you are told there is no more that can be done for you apart from an outside chance of a clinical trial making some difference, you might grab the chance to make that difference. However, you need to weigh up the risks of taking part in something that is still an unknown quantity and the dash of your, and your family’s, hopes if it doesn’t help. It is a difficult decision to make and the people treating you will need to explain very clearly what the risks, and the possible benefits, might be.

If you do take part in the trial, it may have no effect on the cancer, it may prolong your life for a little longer, or it may put you in remission. You may consider a trial worth the risks of the unknown to help others diagnosed with cancer in years to come.

However, any cancer treatment will probably have unpleasant side effects and you may feel that you have had enough of that if you have been through standard treatment already; if you do decide to take part, you can change your mind at any time. If there is no evidence of the treatment working, you may want to stop the trial. Samantha’s father researched the Internet because her brain tumour was inoperable. He found a clinical trial taking place in Budapest and got Samantha involved. At the time of writing, Samantha said that although the tumour hadn’t shrunk, it had stopped growing.