As today is World Cancer Day, I wanted to write a little something. Admittedly, I have been trying on and off to write this particular blog entry and today has given me that little boost I needed to get it written.
Whether or not you have had first hand experience of it, we all know that cancer sucks, that it is physically, mentally and emotionally draining, and that it can have a dramatic effect on not just the patient, but on the people surrounding them, usually their immediate family. The problem, though, is that we tend to forget just how much an effect it has on the patient’s family and just how hard it is for them to watch someone they love go through treatment for such an awful illness. My family was certainly no exception to this.
When we first told that Charlie possibly had cancer, I broke down in tears, convinced I would not be strong enough to handle what we would be facing. It didn’t help that I had been put on medication for anxiety just the week or so before the news as it immediately had me doubting myself and whether I would be able to cope as a mum to a child with cancer, while still be there for my other three children. However, I was lucky, I had a group of amazing friends, who picked me up and told me I was strong enough, told me that if anyone could cope, it would be me. I am extremely grateful to have them in my life, to be there to listen to my worries and concerns, to cheer me up when I needed it, but also to share our progress and moments that deserved celebrating.
Even with the support of my friends, my husband and our family, it was still a struggle most days. Thanks to Charlie having ASD, ADHD and ODD, there were days when he would just not cooperate with the nurses, the doctors and even me and his dad. I would be constantly on edge and on the verge of losing my temper with him to the point that I had to walk away to calm down. It is hard to see your child who, up to until that point, had been so active and so independent, become a shadow of his former self and not be able to do much to help him, no matter what you do or try.
The one thing I quickly learnt was that if I was to be there for him, I needed to look after myself. I needed to sleep and eat well, look after my physical and mental health, as many people constantly reminded me to do. In order to do that, I knew I needed to return home to sleep every night as this allowed me to keep in with our plan to try and keep as much of our normal routine as possible, while also making sure I saw my other three children every day, even if it was just for an hour a two a day. Some people may not be impressed by my decision, and I did have one parent tell me so at RNOH, but I knew I would be of no use to Charlie if I was not sleeping properly and that would not happen if I remained overnight at the hospital or couldn’t see all of my children and husband on a daily basis. Admittedly, I enjoyed the journey back and forth to the hospitals as it gave me time to myself, time for me to relax and get my thoughts in order.
My husband struggled just as much as I did as he was still continuing to work and look after the children for me. I think, for the first three months, it was harder on him as he wasn’t there at the hospital as often as he would have preferred. Eventually, he chose to leave his job, after having being a signed off sick for a month, knowing that me, Charlie and his siblings needed him more. It also didn’t help that we didn’t know how long treatment would continue for. However, it meant we could take it in turns going to the hospital or being at home with the kids. I was honestly happy about it as Jonathan has a lot more patience when it comes to dealing with Charlie, his stubbornness and meltdowns. I think our stress, worries and concerns eased up just a bit once Jonathan was no longer working as it was easier to share the strain of what was going on in our lives.
However, despite how hard it has been on me and Jon as parents, I definitely think Charlie’s siblings, Rachael, Matthew and Owen, struggled with their brother’s illness far worse than we did. They acted act, became withdrawn and, perhaps at times, felt forgotten about. We tried our best to keep them in a normal routine, to given them the time and attention they deserved, but it was hard as Charlie demanded much of our time, but their brother’s illness hit them hard.
The worst part of it all was trying to explain Charlie’s illness and subsequent problems and needs. Rachael was the easiest to tell as she fully understood what it meant when we told her that her brother had cancer. She grasped what the consequences would be, how it would affect him, and while she has struggled with her emotions over it all, she made me proud by shaving her head for charity and in support of Charlie. However, telling Matthew and Owen was much harder as we knew they probably wouldn’t be able to truly comprehend what cancer was and what it would entail.
Matthew, like Charlie, has a diagnosis of Autism and demands a lot of support from us and his teachers to handle some situations. Out of all of my children, it was reaction I feared the most and how the news would affect him. It took a few attempts to explain to him how poorly Charlie was and that his brother would be in hospital for several months. At one point, he honestly believed that Charlie had to be given cancer in order for the Doctors to make Charlie’s back better. I will admit I did laugh when his teacher told me that, but it was his way of trying to make sense of the situation. Sadly, we saw a regression in Matthew’s behaviour, he became reluctant to go to school, started misbehaving and not wanting to join in with his lessons, destroying all the positive progress he had made when he had joined his school, which is specifically for autistic boys like himself. His school have been extremely understanding of the situation, providing as much support for Matthew as they can and have even brought in a child therapist to help him as well. However, the reason for his behaviour became apparent when Charlie finally returned home and Matthew suddenly made our lives easier and stop fighting us over going to school – he had been worried about and had missed his brother, he just hadn’t been able to express that to us.
As for Owen, I don’t think he has ever truly grasped the true extent of Charlie’s illness, except for the fact it was bad and required him to spend a lot of time in hospital. He certainly began to act out, getting into spats with other children at school, refusing to do school work, throwing tantrums at home and become clingy to myself and his dad. Luckily, he has begun to settle down, but it wasn’t until we began working a Drama Therapist that we finally found out how he truly felt, that he was sad that his brother had cancer. For us, that was extremely heart-breaking, because he had not expressed that to us, but, instead, had acted out, which had only caused us more stress and anxiety. Out of all of Charlie’s siblings, Owen has probably been the one who demanded more of our attention to be shown we still love him.
It has been nearly a year now since Charlie was first diagnosed with cancer and he is one of the lucky ones who has not needed many years’ worth of treatments. While he still has a long way to go in his recovery, just having him at home and attending school again has made a big difference to our family and home life. As much as I hate it, and do complain about it, just hearing them argue over who is going to be using their shared Xbox One makes me happy as, for me, it is the sound of them getting back to normal, being the children they were before this all began. However, even saying that, none of us will ever be the people we were before Charlie was diagnosed as cancer forces people to change and it will force children to grow up quicker than they should have to. Yet, the one thing we can take for this past year is, no matter how hard we have found it at times, we have managed to survived it, we were strong enough to cope, because we had each other and because we are a close-knit family, something I am very grateful for.