Jozef’s Story: “I was still there, and I was still me.”
Jozef was diagnosed with leukaemia at 13.
His mum noticed that he was eating normally but losing weight and had swelling on his knees and shoulders. She took Jozef to the doctors. They did a blood test and six hours later they got a phone call to go to hospital right away. He had a bone marrow test and the same day they confirmed it was leukaemia. Jozef started chemo the day after at Sheffield Children’s Hospital.
“I was very shocked; I was just thinking they had it wrong. I thought if it is leukaemia my life would be over. One day I was fine and then you are told you are going to be having three years of treatment; you’re going to be sick, lose your hair.
“It did take me a while to process it, the chemo is a huge shock to the system. I went into hospital feeling healthy and then a week later with the chemo I could hardly go down the stairs like an old man. My main concern was that I was going to miss school and friends, I wanted to get back as soon as possible.”
Jozef had intensive chemo for a year in a pill or intravenous every day and steroids every month, and then chemo for two and a half years after. 18 months after his initial treatment, he was able to go back to school and was in remission for nine years.
“The biggest difficulty was not being able to go out and see friends like if my bloods were too low. Before, I was out with my friends a lot being active playing football and stuff. When I felt a bit better I would really try and see them and do normal stuff that thirteen year olds do.
“The first year was difficult, I lost a lot of hair and put on weight, so it was a big change. You are a skinny kid and then all of a sudden you’ve put on a stone and lost your hair, it was difficult for me and my friends.”
Jozef did well on his GCSEs and started A-levels but started to have problems with fatigue and his mental health.
“At the time I was really active, going to the gym like six days a week, probably in the best shape of my life but I felt terrible. It took a long time to realise the impact that everything had on me mentally. After treatment was worse than being on treatment, I didn’t know what to do with my life.”
While Jozef was in his second year of university, a lump appeared on his neck, under his ear. Because it was small and didn’t hurt, he didn’t take it seriously, and all his blood tests were fine. At his yearly review, he told the doctors it had been growing, so, they did some tests on it. After several months of tests, doctors revealed he sadly had a second cancer diagnosis.
“They told me it was a completely different form of cancer than my first which was really hard to understand. It wasn’t a relapse and they said it was just really bad luck.”
Jozef was diagnosed with grade 3 cancer in his saliva gland and had surgery in July 2018 to remove the tumour, followed by five weeks of radiotherapy. Thankfully Jozef was given the all clear but he then struggled with aftereffects and his mental health declined.
“I had a scan in January 2019 and it showed that everything is fine. I felt great for two weeks but then my mental health really went downhill. I kept on worrying about other things popping up and sometimes you think I might not ever get better. I just didn’t want to feel like this. I was having panic attacks worrying my cancer was back with any little pains.”
With support and encouragement from his CLIC Sargent social worker, Harriet, Jozef was able to access support he didn’t know about. Harriet also helped him with his CV and opportunities to find work.
“I can’t sing Harriet’s praises enough for everything that she’s done for me. I really open up to her because she is so easy to talk to and she’s a great listener. It’s great to have someone outside of my circle who I can chat to because there are some things that you don’t want to talk to your family or friends about because you don’t want to upset them. I can chat to her and get things off my chest but also she has the experience and knowledge to actually be able to help me.”
While in treatment, Jozef also found comfort in gaming and it gave him an escape during the treatment.
“My main concern when I was diagnosed was that I was going to miss school and my friends, I wanted to get back as soon as possible. Just before my diagnosis I just got an Xbox 360 with Xbox live, so it meant that when I felt well enough I could message them and play. All my mates would be in there – it was just like being back at school, it kept me in the loop and I felt normal.
“When I was diagnosed for a second time, it was like the first time with my friends. I couldn’t go out because of radiotherapy which made my skin peel I didn’t see my friends for 3 months. Everything we played was multiplayer, it felt great to be part of a team and doing something competitive again. I was worried that people would forget me, but gaming online with my friends meant I could show them I was still there, and I was still me.”
Jozef is sharing his story as part of CLIC Sargent’s ‘Player vs Cancer’ campaign, to find out more click here
Posted on Thursday 10 October 2019