Caring for a child with cancer
Pain, confusion, shock, snapshots through life, images of his first sight, first touch, first words, first steps. Instances of life up to this point. Nothing, absolutely nothing can compare to the instant devastation that six ordinary letters of the alphabet can cause when it is applied to your own child. I feel for anyone who has the misfortune of having to deal with a cancer in the family, it can take over your lives and can get the best of you and those you love. When my son was diagnosed, I felt a heart-wrenching pain. Looking back it still feels as painful now as it did then. I’m a fairly private person and someone who rarely shows their emotions, even to my wife. But when those six letters were involved, emotions were almost overwhelming. Here are some of the things I learnt as I forged my way through caring for my eldest son, Neil, as well as navigating the emotional needs of the rest of the family.
One day at a time
Don’t plan ahead too much. Take the days as they come. Chemo affects each person differently and each day can end differently. Moods can change, side effects vary and progress can come in waves. Planning too much won’t get you anywhere. As a family, we supported each other to get through one day at a time and that worked for us.
“Live one day at a time. It is called the ‘present’ for a reason. Find something to laugh at each day.”
Keep to routine
When we received the news I gave the family two days to linger before I sat everyone down and said “life has to go on”. You have to make things as normal as possible. Changing routine would cascade everything. If you begin to go too far off the norm that’s when things will spiral. I treated Neil exactly the same as I always had, and exactly the same as my other sons. There was no point in treating him differently and there was no reason to change the way our family operated. And his appointments at Icon here in Townsville were similar, it became part of our lives and we all got on with it. One thing I got every member of the family to do, was to write down questions that they wanted to know the answers to in a note book. We then asked these of his doctor and his care team at Icon. Getting the answers to these questions did alleviate the worst of the fears that each family member had. It is the fear of the unknown that is the most debilitating feeling we had.
Rid yourself of guilt
I couldn’t help but ask the question – did I somehow give this to my son? Did my genetic makeup give him this disease? Then I realised, there’s no point in thinking that way. It’s happened, we just need to take the steps and do whatever we can for him. Focussing our energy on making sure he received the care he needed was our priority.
Hero the brighter
When you have a child you aren’t supposed to survive them. It’s just not right. When my son was diagnosed with cancer the very worst picture imaginable was there in the very centre of my mind. It was a picture of absolute devastation as I saw myself struggling to stop my friend of 30 years and wife of 25 years wailing in pain and anguish trying to get at the casket which enclosed the shell of the child she carried at the beginning of his life. Surrounded by my other sons unable to comprehend the situation. The feeling that he would no longer be here. It hurt, I was hurting. But I couldn’t think this way if we were to get through this.
You have two choices when you are caring for someone with cancer. You either focus on the good parts, or the bad parts. Focussing on all the bad parts that come with cancer isn’t going to get you anywhere. You end up crying, getting angry with the world and sitting at a standstill.
Instead, try to laugh every day despite the circumstance you and your family are in. You have to flood it with the better parts. Believe it or not you will find many happy moments. One side effect of the chemo for my son was the chemo fart. My other two sons and I believe how truly bad his butt coughs were. Our two dogs were similarly not impressed judging by their head shaking and sneezing. The normal family interactions we all had, helped Neil, and us get through each day.
Another example was surprising Neil on his 24th birthday. The Icon staff helped me put together a surprise party for him while he was getting treatment. This gesture was embraced by his two bothers and my wife, looking back, I think it helped them more – a little celebration goes a long way on both sides of the coin.
At times, he did get maudlin’, so a swift harsh dose of reality was delivered as per normal family rules. He’s got cancer. So what! Lots of people have cancer, and are fighting it with everything they have. Even young kids not yet going to school have cancer and are fighting just so they can go to school. It does put things in to perspective pretty quickly. It really helps to know how your children react to criticisms.
It’s their fight
We can help them where we can, and if we are permitted to but in the end it’s their battle to fight. We were his team supporting him from the sidelines, coaching him when he needed a pep talk but he had to do the hard yards and he had to find the courage to get through it. I found it wasn’t necessary to smother him with support.
Just being present for him and my family was enough.
Being at my son’s appointments, sitting with him and getting his mind off his biggest concerns when they came about. It was important for us all. My wife is much more emotional than I, so she needed me to have the strength she didn’t. When she cried, I held her, when she felt it was all too much, I was there.
I’m very good at suppressing my emotions because I don’t need people seeing me ‘lose it’, but behind closed doors I give myself permission to let loose, and during my son’s treatment, this worked for me, because someone needed to be keeping it all together.
Support of your care team
In today’s world of information and social media, it can be easy to get caught up with information overload. Doctors Google and Bing haven’t been trained, or dealt with real people. Listen to your doctors and medical teams and ask them to point you in the direction of good resources. Neil’s care team showed an empathy that was admirable. The nurses I met at Icon are able to form bonds with the people and their families they are treating. They help minimise the pain and find the time to answer your questions, make conversation and offer support when needed. Knowing my son was in good hands gave me confidence and gave Neil people who he felt comfortable with.
Don’t live in fear
Every now and then I still live with the fear that if one son can get it, so can my other two sons. I also fear that his cancer could return; I still fear the image of that casket. But you can’t let fear take over your life. As a family we have been reassured by his doctor that the chances of this mongrel returning is almost zero. However, Neil has been affected. Any little ache or pain is something that he fears is a return of the illness but continued reassurance is always sought at Icon and always given.
After Neil’s treatment we went on a much needed family holiday and just enjoyed each other’s company.
Revel in these moments and enjoy every breath.
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