It is not always easy to explain how it feels to be a parent or carer of a child with cancer. This article, by Nicole, is taken with her permission, from Facebook, and tells of the anguish of trying to stay positive for your child, while your insides are just churning with anxiety.
Here I sit reflecting the past 5 years, this is something I do leading up to any surgery, procedure or results. My mind cannot focus on anything else, I think about the original diagnosis, the denial and the reality – reality is not how I expected my life to be. Cancer not only robbed my daughter’s childhood, even if she manages to fight every cancer cell in her body my life will always be centered around the sh** that tried to kill my daughter. It has destroyed me, robbed the innocence of motherhood… My daughters own body has raged a war against herself and I am powerless to stop it. There is nothing worse than that…. is there? And whilst she sits there so positive and I pretend everything is ok and everything is normal – inside I am fighting a battle no parent should ever have to…. how awful is that I have thought about the song that she will be remembered by, how bad is it that I lie and tell her everything is going to be alright when I don’t actually know if it is…. please don’t tell me I’m strong because I am so weak. I don’t want you to walk in my shoes – I never want you to feel the pain I’m feeling, I never want you to look in your child’s eyes and be filled with the fear and worry I feel. All I want is kinder treatments, research and a cure that can give our children 100% chance to become an adult. I want people to pause, just for a second and try, try to imagine it was happening to them… because the 9th October 2012 I was just like you..
Thank you for allowing us to share your feelings Nicole.
It’s not easy being a child with cancer, and we give them a lot of attention. It’s the natural thing to do. We want to make them feel better. We mustn’t forget that often these children have siblings, and it can be a very hard life for them too. Their parents may have to rush off to hospital at short notice many times (children on treatment can suffer many side effects requiring emergency admissions), family plans get thwarted and it’s a worrying time for everyone.
While parents can sometimes take leave from work, siblings have to carry on as if everything is normal especially where the routine of school is concerned etc and that is a huge weight on small shoulders.
With this in mind we want to reach out to these Superhero Siblings and tell them that they are amazing too, that the part they are playing and their role in the family is important and they have not been sidelined.
Today we introduce Henry. He was happy to answer some questions for us, and for us to share them with you all. The answers are his own words.
Can you tell us how old you were when you were told about Hugo’s illness?
I was 6 (and a half!)
We know you work hard at school, what is your favourite subject?
Maths is my favourite, but I also like Science and PE.
When you are not at school, what is your favourite thing to do?
I like being with my family and also building lego.
If Cancer was a person, what would you tell them?
I would tell them to go away and leave our life. You are mean to people who you give cancer to, you should be nicer.
Is there anything else you would like to tell us to help explain to other people what it is like to be Henry?
It is quite hard being Henry because Hugo has cancer and he gets more attention most of the time. It is quite hard, but it is also fun playing with Hugo when he is well. It’s a bit annoying being the big brother because Hugo keeps messing up things and I’m not always able to understand him and he’s not always able to understand me. It’s also nice because I get to go out more because we don’t want Hugo getting germs and we go for nice days out.
Thank you Henry for being our guest!
You can find out more about Henry and his brother Hugo on their Facebook page, please leave Henry a comment and let him know that he is awesome.
If you know of another sibling who deserves a shout out then you can contact us and we will give them a feature here too.
Edan Gelt is a Communications Consultant and Strategist with award winning experience. Additionally, she has passions for community relations, volunteering, and childhood cancer research making her a leader in the community.