THE BLOG
22/02/2016 12:53 GMT | Updated 22/02/2017 05:12 GMT

I Felt Guilty About My Son's Brain Tumour

There is no way a parent can ever prepare themselves for their child getting cancer.

When I was told that Cai, my eight year old son, had a brain tumour and would need surgery followed by extensive treatment, I certainly wasn't prepared. Despite weeks of worrying about his headaches and pushing doctors to give him the scans to get to the bottom of his condition, I wasn't emotionally braced for the news - maybe because you never can be. I just went numb.

The experience of a parent when a child has cancer is hard to describe. You want to support your child through something so scary and often painful, but at the same time you are trying to cope with things yourself. You can't look like you're struggling, because it's your duty to be there to support them. So your own emotional well-being takes a back seat.

Cai's response to this horrible experience was simply to fight back against everything. Most adults would crack under the stress of constant headaches, being jabbed with needles, chemotherapy side-effects and life-threatening surgery, let alone a child. So his behaviour deteriorated.

Every trip to the hospital became a traumatic experience where I would watch my son being so unhappy and in pain and it was so hard to have to force him to be there, to tell him that he had to face the needles and the treatment - that it was all for his own good.

So much of the treatment of children comes down to personality. Cai just didn't click with some of the doctors who were looking after him. He didn't trust them and because of this he didn't like seeing them and would fight back against them. They were professional and cared about doing their jobs well, but they didn't understand Cai's character and needs.

It was when we met our CLIC Sargent key worker, Jane that things started to come together. She became our main point of contact with the hospital and would answer our questions, feed our thoughts back to the rest of the multi-disciplinary team, and visit us at home when Cai needed his bloods doing. Slowly but surely he started to trust her. They would joke and banter, but he got the treatment he needed. When she came to the house we were saved from a 100 mile round trip. There was an understanding of our particular needs and everything was done to make things that little bit easier for us. She even explained everything to his school, because the transition back is a whole new challenge for families. Cancer hits every facet of your lives.

As we came out of the other side of treatment and embarked on what Cai and I call 'the new normal', the scale of the impact of the treatment on my own mental wellbeing became clearer. I had been living with such high levels of stress for so long that I was completely emotionally exhausted. There were times when I felt like I just couldn't cope. It was at those moments that little nudges of support from Jane were enough to keep me on an even keel.

I think the thing that I least expected was the guilt. I would feel unbelievable guilt when I saw my child sick and in pain lying there in the hospital. I was supposed to protect my child and make them happy and I felt like I had brought him into the world where he was just feeling pain. I would've given anything to take that pain onto myself, but I couldn't do it and for that I felt guilty.

I have heard the effect on parents described as mirroring post-traumatic stress disorder and I don't think that this is an exaggeration. All of your energy and focus goes towards being there for your child. You have to be a rock, no matter how much strain it puts you under. Then when the moment comes to let your guard down, it's easy to feel like you can fall apart. I'm so grateful for the support I had, which helped keep our family going.

When a child has cancer, although there is only one patient, the family as a whole needs support. Jane understood that each family will have individual needs and that treating a child just like any other patient can make things harder rather than easier. But if you give a family the right support in the right places, and they trust you, then they can keep the strength to see light at the end of the tunnel.

To find out more about the support CLIC Sargent provides for children and young people with cancer, visit www.clicsargent.org.uk