Survivors' Forum

Some experiences of Contributors to my Teenage Cancer Book

The first contribution, told by Jim, is about a strong religious experience.

My mother was deeply religious and claims God told her on the day I came to her so ill, that I would be stricken with a life threatening illness but that I would also be healed, to bring glory to God. I was not at all religious - as a family we never attended church; I think because like most people we thought we were too busy trying to survive. After the doctor told me I was definitely going to die, my mother told me about her knowledge from God.
 
At first, I didn’t know what to say or think. I was so scared, confused and angry, I really wanted to believe her. She told me that I would have to go through a lot of trials and suffering but not to be worried as God knew how strong I was and would not put me through anything that I could not cope with. I asked Mum why God would choose someone like me - I was a punk rocker. I wore ripped up and painted clothes, wore earrings, hung out in the pubs and played in a punk band. I thought it very unlikely that God would even look at me twice without shaking his head in anger. Mum explained that she thought it was because I knew so many young hurt and desperate people and that they looked up to me - our band was popular with them. So many of them were homeless, on drugs, abused and thrown out of home etc.

When all my tests came back clear of cancer, Mum made an appointment to see the head of my oncology team and asked if he thought it strange that someone who had been as sick as me could suddenly be so well. He replied, ‘Yes. At the moment the tests show your son to be cancer free but the only way to be certain would be to perform a lot more tests over a period of time and then to perform surgery.’ My Mother asked why they would want to operate and he replied, ‘To see where the cancer has gone. We can’t believe that it could just disappear after such a small time of treatment. That a boy as sick as your son could suddenly be so well.’

My mother explained that I probably wouldn’t consent to any more tests but I may consent to surgery. She added, ‘If he does consent to surgery and you find nothing to suggest that my son has cancer, would you be willing to offer the glory to God?’ He replied that he believed that unexplained things often happened in the medical profession; he had witnessed several events in his career. Then finally, he said, ‘Yes. I agree.’ My mother left his office promising to discuss it with me.

I decided to go through with surgery, as it would show if the cancer had really gone. The night before I was due to have the surgery, I was awoken by a severe sweat. I was drenched from head to toe and felt a burning sensation all over my body. I don’t know how long it lasted. I woke up and it was morning and I felt great. When they opened me up from the groin to the breastbone they only found scarring where the tumours had been, nothing else. All the doctors involved were amazed.
Mum had been taking me over the 8 months or so of my treatment to my auntie’s home where a priest, a good friend of hers, and a group of my young friends laid hands on me and prayed over me. This was very out of character for me, but something outside of myself was guiding me, like acting for me. It is very hard to explain.

Mum ended up writing a book about this event, she paid to have it printed etc and gave it free to anybody who wanted to read it. I can’t explain what has happened to me and why I am still having recurrences. Maybe my experience is still helping people in some way. If it is, I am glad. It gives my life meaning. All I do know is that I don’t know God’s plan for me or anyone else. I just carry on the best I can. Jim.

Survivorship

I’m thankful for each day I’m alive and I appreciate each and every day, even if it’s raining – I think of all the nice things in my life. Cancer will never control any part of my life – it was there and now it’s gone!

Having had cancer has made me a very grounded person – I’m much happier and calmer; nothing really phases me. I never really worry too much as nothing is as bad as being told you have to undergo brain surgery and to sign a form saying you might not wake up normal!

Having cancer gave me the determination to be a successful hair and make-up artist. I’m very laid back, very ambitious and very secure with myself. I will never take things for granted. I am very career minded and am doing something that I would never have believed I could do as well as meeting some of the world’s amazing people. It really is a fairy tale! Sherrie.

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I’m cautious about what I do but I don’t let the fact that I’ve had cancer stop me from living my life. I am religious and I thank God that I’m OK. I’ve now been totally discharged from the hospital and don’t even have to go back for check-ups! Lara.

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My whole outlook is now more mature. I sometimes feel I am a 30-year-old living in the body of a young person. Provided I knew I was going to get through it, I wouldn’t have changed my experience. It’s given me an edge on life where I’ve seen things more clearly and appreciate things more. I think your mind protects you from some of the awful things you have to go through – I remember my treatment how I’d describe a film. I’ve always believed that a bad attitude is the only true handicap.

People ask me do I believe in God and do you think it’s a test? I have mixed feelings on this subject. If there is a God then what did I do to deserve cancer? If it’s as a test, why should someone do that to me?

Now that I’m in remission I am thinking very carefully about what I want to do with my life. If cancer were to come back, I’d want to be doing something every day that I want to do. I always wanted to be a mechanic but having cancer took everything away. Now I am waiting to see if it’s really what I want. Adam.

*****

My whole view of life has been altered. From now on, I have a drive to make my life worth more than it is right now. I have no choice but to aim extremely high. I have also learned to take things in life less seriously, to take most things in my stride, because in the long run most things that seem important at the time don’t really matter that much.
I do talk more openly and I’m able to use my experience as a basis for helping other people through problems. My family and friends now share my energised feeling and want to make the most of life. I have also grown immensely stronger in my faith and have a stronger than ever drive to live a powerful Christian life. David.

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People say that they must be being punished when they have cancer, but I feel it was a blessing in disguise. Things that were important, like bad hair days, your crush not liking you back, or getting a C in an exam, now seem really trivial. I grew up a little faster than intended, but that’s not a bad thing. You have to embrace life and live each day to its fullest. It’s almost as if I got a second chance to live life a whole new way, appreciating life more.

I learned a lot about me and a lot about life and it makes me different from the millions of other teens out there. Of course, I am living today and am almost perfectly healthy: I’m sure if this weren’t the case, I wouldn’t feel so strongly about not wanting to take the experience back. Today, I am perfectly happy about everything.

My family and friends have seen me change a great deal. Battling cancer proved to them just how strong I was - just getting through it without completely breaking down required me to grow up and to become more mature at age seventeen. I haven’t altered the way I live my life much, except that every day I wake up feeling lucky. Not everyone who battles cancer is able to wake up every morning cancer free. Also, I have lightened up a bit and I now try to have as much fun as possible even when I’m doing homework or going to classes. Emily.

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I like to think I’m more positive in the way I look at life. There have been some bitter blows emotionally and physically, but I get on with it. I’ve always been quite happy go lucky, even as a kid. I didn’t like what happened to me, but I was lucky. At first, when I realised I had Hodgkin’s I didn’t know how long a life I had to look forward to. As the years have crept by, I feel easier with the situation and so far, it’s been a bonus! It changed my outlook on life. John.

This has definitely been life changing in a positive way. It’s made me appreciate life. I’m realising now that it was an awesome, giant first step in the right direction: down a path towards wholeness, gratitude, spirituality, learning more about myself and about life. Aubrie.

The most important things that have helped me through survivorship are my friends and family offering love, support, laughter and their best efforts to understand what I’ve experienced. And amazing hospital staff: using the right balance of straight-forwardness, restraint and compassion. Fellow patients and survivors have also helped. I realise that my experience was a cakewalk compared to some people... but I think our shared strength and good humour make the fight bearable and keep us optimistic.

Four years later, I’m realising that survivorship doesn’t need to be experienced alone. We have such a large support system during our sickness and treatments, then we are thrown back out into the world... scarred, toughened and (I think) blessed with a new perspective on life.

These days, I am constantly stretched between two extremes: I want to make an impact on this world through my talents, ideas and passions. I feel indebted to the countless scientists, doctors, and nurses that shepherded me to good health. Shouldn’t my energy be spent doing at least as much good? But I was also given a chance to savour life: a chance to slow down and appreciate people, to live healthily, to laugh, to make time for what matters. To live with grace. Surviving cancer and returning to school on a new career path have amplified these feelings; so I struggle with this dichotomy every day. Jason.

I had all that could be given: support, love, and my family and friends always being with me. I got an awful lot of sympathy, which I loved! I felt like, ‘Yeah I have cancer, feel sorry for me!’ But after I was better it was really annoying being known as ‘the girl who had cancer’. I am now a lot more cautious about everything. I am more emotional but stronger. I always felt like my life was leading up to something and now I know what it was.

Sometimes I feel like I am not coping but I just get on with life and try not to think about it. I wouldn’t cope if it weren’t for my family. What I said to myself after I was better, and what I still say to this day is, ‘Everything’s gonna be all right.’ Before I was sick I used to think people who had cancer were used to it. Now I don’t have a clue why I thought that. I also thought cancer meant death but in most cases, it doesn’t.

Life is better than before I was sick - I plan more for the future and I feel I can accomplish anything. I love life more and feel really lucky when I think about all I have. I’m more open about my feelings with my family about what I’ve gone through.

I do still take the little things for granted but I appreciate my health so much, words can’t even explain. Joining Canteen (Ireland) has made me more confident and I now find it easy to tell people I had cancer. When I’m positive about it they react positively about it too. I love this quote, from James Dean: ‘Dream as if you’ll live forever… Live as if you’ll die today.’

I would like to become a paediatric nurse and I know it sounds cheesy! But I really do think I’ll make a difference. Cancer will always be part of my life and I am okay with that. It’s made me who I am today. Sarah B.

I have so much to thank my friends and family for and the doctors and nurses who helped me get where I am today. I also have a big thanks to my donor for my bone marrow transplant – I don’t know who she is – she saved me and gave me a second chance in life.

I am now a lot more confident. I don’t take life for granted any more. And I can talk about things more easily. In fact, I have been told I never shut up. I talk all the time! I have heaps of confidence. It’s great. Vicki.

I am thankful; I thank God every day that I am here with my family and friends. I make sure if there’s something I want to do or to have, I do it and get it now. You never know when something can happen. Luchiana.

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My illness made us all more health conscious. I get angry when I see other people taking their lives for granted. A lot of things people think are important are not important to me, such as owning an expensive car, owning your own home, getting rich, keeping up with the Jones’. My family would say that I am more aware of everything and everyone around me. Jim.

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I have my down times about my physical disability because I used to love my sports. I still get sad now and then when I can’t join in, but I’m a pretty happy fella. I don’t have a girl friend or wife, but that’s not everything; it might happen one day. I wish I had more confidence. I’m very shy around girls, and not confident enough at work sometimes, but it’s building, always building; that’s was makes me happy, always improving.

I take more pleasure in friends and family and cancer has given me a soft spot for other people that have difficulties. I am now more determined and positive. I am sometimes humble and am able to enjoy the simple things in life. I’m more compassionate and sensitive to people who have difficulties in life - I want to help and encourage them. Jonathon.

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Cancer has made me much more confident about what I can do and made me realise that I am a strong person. When something difficult or challenging comes along, I just think about how strong I was in fighting cancer and it helps me get past it.

Having cancer has made me realise what I want to do with my life - be a nurse practitioner in paediatric oncology. My nurses were great. They took time to establish a real relationship with me, making it easy for me to share my feelings and concerns with them, and made me so comfortable being in hospital. Suzy.

Advice from survivors

Eat as soon as you can after an operation, even if you feel nauseous: for my first operation I didn’t and felt terrible for 2 days. After my second operation, I had a meal almost immediately after waking up from the anaesthetic and recovered so much quicker! I found this was the road to my speedy recovery – and to laugh as much as you can. With radiotherapy, just sleep as much as you can to repair your body. Sherrie.

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Always tell the ones you care about you love them! Luchiana.

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Try to stay positive, no matter what doctors tell you (they don’t know everything). Everyone is an individual. Parents – try not to smother your sick child. Try to treat them the same as always; just be there when they really need you – you’ll know when those times are. Jim.

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Take a notebook, a companion and a critical ear to all of your appointments, especially the early ones. You may be overwhelmed at times, so it helps to write things down and have the extra set of ears and support from a friend or family member. Take charge of your own health. Do your research. There can be several options for hospitals, doctors and treatments so don’t worry about hurting anyone’s feelings by seeking second and third opinions. A given doctor, for example, might only perform the RPLND [see Chapter seven], a few times a year. So be sure you are comfortable with him or her.

Don’t try to forget that you ever had cancer... chances are it won’t work. Do realise that this has affected your loved ones, too - talk to them about it. Do bring humour into your life – make jokes about your cancer. Do remember that mention of ‘the big C’ will shock people even if you are ‘C-free’ - it takes practice to talk about your experiences, emotions and scars (I am still working on this last one... especially during beach season). Jason.

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Put yourself in your doctors’ hands and believe in them. Don’t be afraid of chemotherapy or radiotherapy; it can do a bit of damage to you, but I found that this heals itself again. Think about the things you love doing, and you soon will be doing them again and think of the funny things that happen to get you through the hard times. I guess that’s easy to say now that I’m well. Having cancer makes you unique. You have a good story to tell. Be stubborn. It’ll get you through.

If your child has cancer, don’t put too much pressure on. They need to deal with this great change and don’t need extra stress. Let them pursue employment and mobility when they decide to. Be sensitive: if they can’t swim in the surf anymore, don’t take them there. It will make them very sad and frustrated. And don’t ignore your other children. Finally, Cancer can be beaten. It’s as simple as that. Jonathon.

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Take one day at a time. Stay positive and do things to take your mind off it all like reading and spending time with your family and friends. Never blame yourself for it or anyone else because it’s no one’s fault. Never bottle up your feelings. Talk about how you feel with your family and friends and have a good cry; you’ll feel so much better after it. Sarah B.

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Take one day at a time; one moment at a time when things get hard. Just take care of yourself and fight. Focus on the little, positive things. Don’t get overwhelmed with the big picture. Find gratitude in every day. My parents would have me tell them three things each day that I was grateful for. I was surprised at how much I found to be grateful for! Focusing on these positive things aided my recovery and changed my attitude and outlook. It made me look at life as more beautiful and my situation as not so bad. And with the amazing mind-body connection, if you focus on the positive and tell your mind you’re doing great and feeling better and healing, your body will believe it!

Medicine is definitely more effective when you work with it, not against it. I would highly suggest looking into complementary medicine, to give you a more whole system of healing. (Such as mind-body practices: meditation, visualisation, self-hypnosis, imagery, prayer, etc. as well as massage, a healthy diet and/or nutritional supplements including glyconutrients!) EAT!

For parents, remember that you are your child’s best advocates. Be there and be strong! Aubrie.

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For someone newly diagnosed with cancer, try to do the things you like to do. Try to think that you only have a cold or something similar and that recovery will take just a bit longer than normal. If you have pain or sickness, tell someone straight away. I found all my treatment really hard, not knowing what was around the corner. When the times were tough, I’d listen to music and look forward to happy things. Cancer has made me realise that you only get one chance in life, so live it how you want it to be. Vicki.

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It is so important to stay positive. If you surround yourself with people you love and allow yourself to lean on others for support, it makes a world of a difference. Suzy.