Cancer, neurodiversity and me

Matt: My eldest son Joe noticed a lump in his testicle in August 2021.  Joe has high functioning autism, so things for him are either black or white. Because he had his suspicions, he was ok when he was diagnosed as it had confirmed it for him. He had an operation to have a testicle removed five days later.

His doctor said that the cancer was gone but that he would need three days’ worth of chemo and two infusions in the following weeks. The doctor was delivering good news, but in Joe’s black and white mind he couldn’t see why he would need chemo when it was gone.

I explained to Joe that it was a precaution to keep it away, but he was still hesitant. He was due to start his first chemo at a local hospital in March.

Joe: I was in a room with around nine other people who all looked very ill while having chemo. That was the beginning of me not wanting to have it. I have a fear of the medicine going into me and after around an hour of them trying, my body wouldn’t let them get it in. I was close to having a panic attack, so I said that was it and I left.

Matt: They asked if Joe would prefer to have his chemo on the Teenage Cancer Trust unit at the University Hospital of Wales in Cardiff.  We went to look at the unit and had a chat with all of the staff and they were lovely. He would also get his own side room so he wouldn’t be surrounded by people. Joe decided he would have his chemo there.

We went into the unit for the treatment and when the needle went in, Joe got very upset and depressed.  We went home, and I told him that if we didn’t go back in for treatment then the cancer could come back, and it could kill him. He looked me straight in the eyes and said: ‘Good’. I think he was partly saying it to shock me, but it was really upsetting to hear as I didn’t realise how little he thought of himself at that stage.

He had another scan and found that the cancer had spread into his lymph nodes, and he’d now need more sessions. Joe loves animals and part of the bargain for him to have his treatment was that we’d get him a puppy afterwards. He knew that he’d have to go through with it because he’d need to be around to look after it. We found the dog while searching online while he was having his treatment, so it felt meant to be.

Joe: I still felt nervous about having the treatment, but I knew if they could get the first bag in me then I would be able to do it. They had trouble getting the needle in, so they gave me some VR goggles to help focus my mind away from it. Once it went in, I found I didn’t need the goggles anymore.

Matt: If it wasn’t for Teenage Cancer Trust, everything would have been more of a battle. We knew that it would be game over if he didn’t ride it out, but the team worked wonders with him. He takes a toy sloth called Catherine in and they always say: ‘Hi Joe, hi Catherine.’ Everyone makes us feel welcome and it’s a nice place to be in a horrible situation.

Anna, Joe’s Youth Support Coordinator, always takes time to chat with him. Joe writes books and has had a few published online and he draws pictures to go in them. When he’s drawing on the unit, Anna asks all about the characters. She also has one of his pictures on her desk. She takes an interest in the other things in his life too, like his puppy.

We were worried about how little Joe thought of himself, so Anna arranged for Joe to speak to a psychologist. We’ve tried psychologists before, but Joe hasn’t really opened up. He’s been a few times now and he is opening up to her. He does seem more positive now.

Joe: The staff on the unit have been wonderful. If I couldn’t deal with something, then they would take the time to talk through the problem with me. They would never force me to do anything I didn’t want to.

After my treatment’s finished, I want to continue life and continue my writing and drawing. My advice to other people going through cancer treatment is to try and laugh about it. It’s one of the most negative things you can experience, but you need to try to look on the positive side and try to laugh and smile. If you can’t laugh, then your outlook will be worse.