Take my Hand - a Survivors' Quilt

Simone de Mondelaers



Speech presented at SIOP/ICCCPO meeting in Montreal

I am Simone Mondelaers, I am a survivor for 33 years, I was diagnosed at the age of 4 with a Rhabdomyosarcoma, and I thank ICCCPO that I may share my experience with you. I say my experience because I only can speak for myself.  

I'm pleased to show you our long-expected quilt. All of the survivors have done their best to make a personal patch. It's not completely finished, there are still missing hands and the final touch is not quite done, but this couldn't prevent me from showing it to you today. For this moment, I have 12 countries who have cooperate. The quilt is sewed by me, a friend and my sister.  

I still have blank patches and like to call on survivors present in this group, to borrow their "hand-print" and to add their instant made patch to our quilt.  

Our quilt shows hands from the entire world. Hands belonging to young people, who's lives have been marked by cancer, childhood cancer, but they are cured now.  

On behalf of all these survivors, I'd like to thank all parents for their devotion to their child with cancer and for everything you achieved as a support group. And we hope that we can be a positive sign for all the children who are still fighting cancer.  

I felt a strong desire to meet companions in distress, companions who suffered from cancer, people with whom I could share my experiences, my pain, but also my joy and the lessons I learned thanks to this experience. This strong desire resulted in the creation of this quilt.  

Looking for survivors of the '60s, the period during which I was ill, it soon became clear that only a few of these patients survived. I was pleased to hear that a lot more patients from the 70's, 80's and 90's survived.  

Knowing this, I again reached out for cooperation with survivors, similar to what I did last year in Frankfurt where I met many of you. And thanks to the input of the board and of parent organizations I was happy to receive lots of patches to make my dream come true. Your reactions touched me deeply and filled my heart with joy. It strongly made me feel I wasn't alone, but united with others. I had a strong feeling of recognition. I received lots of positive reactions from companions in distress living through-out the entire world. Events like this make the world seem a lot smaller.  

Some people shared their life story, others didn't. Some of the survivors are married and live a normal life, others are going to medical school or work or study in the nursing/caring sector, wanting to be socially involved. As you can see, there are also some little ones belonging to children for which we all, hopefully, will be an example, because as young as they may be now, as a child with cancer, they will grow to be an adult much faster than others of the same age.  

Suffering from cancer taught me to see everything in the right proportion, made me live much more intensively. I learned what's most important in life. A materialistic way of living became less important, cancer teaches you to let go.  

It is difficult for children and certainly for adolescents to handle emotions. It is tough to cope with the changes they experience and, if on top of all this they start suffering from cancer in this period, they can become seriously messed up. As a child in trouble you try to be strong for your parents, you certainly don't want to hurt them, because they already have so much sorrow and pain, you feel responsible, you just want to be the perfect child to compensate for their grief. As a child you hide your own pain and grief but later on, sometimes after many, many years, this pain returns and overwhelms you and gives you no other choice than to cope and deal with it.  

I strongly believe that this painful process can be handled in a different way. As a parent you can avoid a lot of suffering for your child if you're able to talk to your child, open and honest, to share your emotions and pain. A child senses instinctively when his parents are blocked and unable to talk about their feelings. The child with cancer can't grow and possibly ends up in a deep dark hole, if his parents continue to live with hidden pain and grief. This painful situation makes you feel as if some parts of your life are missing, this feeling is very strong, it exists more or less on your subconscious level, but it is strongly present and prevents you from ever accepting your cancer and its corresponding injuries. This feeling continues and makes you stay uncomfortable towards your disease until you're strong enough to deal with it.  

Cancer changes your life completely. Let's think about the long-term consequences. It is important to face these consequences, to talk about them with your child, make sure that your child is aware of what he can expect. Doing this, your child will never blame you afterwards.  

The period in which I suffered from cancer, didn't have much room for open and honest discussions. Talking about cancer was almost impossible and the long-term consequences were not mentioned at all. Therefore, I knew nothing, this definitely had serious consequences and created unnecessary feelings of guilt. I received radiation therapy on the hypophysis. One of the consequences of this radiation is that my uterus didn't contract whilst delivering my baby, in other words, I didn't get the usual contractions. Also Prolactine is activated in the hypophyse. Due to the radiation, part of the hypophysis was also affected and therefore it was impossible to breastfeed my children. These are just a few examples of the long-term consequences that have an impact on your daily life. Knowing these long-term consequences in advance allows you to learn how to deal with them and to handle the problems when they occur.  

Nevertheless I dare say it is possible to live a good life after the cancer, but to live this life, you have to face the dark side first; you have to accept it and then you have to let go of it.  

Because the cancer taught me how to fight, it is easier to handle difficult situations in my life. I don't loose myself not so quickly anymore, instead I learned to fight back. I also learned that tears don't solve the problem. But if you are strong enough to ask for help to a person, in you prayer or meditation, or whoever you believe in, your call will be answered and you will receive what you asked for. Even more important is to believe in yourself. To know that you are never alone.  

I lost a big part of my youth. I struggled with nightmares and fear. On top of this I had to learn how to live with a scar in my face. But I don't consider the scar as a handicap anymore. I learned to accept and to let go and now the scar has it's place in my life, and instead of being a handicap it became one of my strong sides. It helps me to continue.  

Today I'm happy to share with you: "I was lucky, I survived." I became a strong, woman, but still very well grounded and watchful day after day. I'm married with a very special man, and I am the proud mother of three children. I live a normal life.  

Now, I dare say, I'm grateful for everything I went through. Without my cancer experience I would never have been the person I am today. I learned the lessons of life, and these were sometimes extremely tough and hard. 

But, never believe your child won't suffer again because it already suffered enough due to his illness. Even though you are a survivor, life just goes on, including the down periods. It is just a matter of taking life as it comes with all the ups and downs and then, one day, you will say: "Thanks for this life. It is worth to fight back."

Dear parents, caregivers, social workers: this quilt, that I named "Take my hand" is a symbol of hope and belief in life and also a sign of a new start. A new start in meeting other survivors. I call on all of you: don't stand still, reach out for each other, stand up and live your life, share experiences with other survivors, learn from each other, it's more than worthwhile.