When I was 11-years-old, my brother Angus was diagnosed with cancer. I was taken to my Gran’s house for the night and the next day I was told that he had leukaemia. I didn’t really know what that was initially but I was given a booklet to read. I didn’t realise how serious this all was until my Dad came into school with me to tell my teachers.
The cancer Angus was diagnosed with was called acute lymphoblastic leukaemia, an incredibly rare form of blood cancer. I remember visiting Angus for the first time in hospital, he looked like a different person from the side effects of chemotherapy and it was horrible seeing him in pain. Angus was 14 when he was diagnosed. He was too young for the adult’s ward so he was put into the children’s ward in our local hospital. He was surrounded by young children, his bed was too small for him and his room was decorated with ducks. The nurses weren’t used to speaking to someone his age, and I remember clearly one day a clown came to visit the ward – Angus wasn’t impressed.
It was a really tough time but eventually Angus finished his treatment, he went into remission and we thought we could go back to being a normal family.
But when I turned 19, five years after Angus has been given the all clear, I started to notice a lot of pain in my lower back. I went to the doctors and was given antibiotics, but the pain wouldn’t go away. Four months later, after several tests and two days after Christmas, I was told I too had acute lymphoblastic leukaemia. I remember that day so clearly. Family time had become so precious after my brother’s experience, so I just wanted to celebrate the festive season. Instead we had to face up to the fact that as a family, we were going to be affected by cancer all over again. My parents tried to keep a brave face on, but it must have been difficult for them. My brother and I had both received a diagnosis of the same rare cancer that typically affects only 1% of the population a year.
I started chemotherapy a couple of weeks later and I didn’t have the side effects that Angus had. We are quite a jokey family, so we were joking that he was a wimp and made a bigger fuss. The treatment was harder on him though. At first, my hair didn’t fall out and I thought I wasn’t going to lose it, so it was a real shock when it I lost it all suddenly. It was upsetting, but I got used to wearing my wig every day and to be honest it started to become the least of my worries because of everything else happening.
Throughout my treatment, unlike Angus, I was in a Teenage Cancer Trust ward at Addenbrookes Hospital and I can’t tell you how much easier this made things. There is a community feel, everyone knows everyone and you support each other. You don’t feel alone and you are able to make friends with people your age who understand what you are going through. I did find it shocking at first though, you hear how many people cancer affects but seeing everyone around you suffering with the disease puts thing into a perspective.
My boyfriend and my friends were able to come visit me whenever they wanted and in comparison to where my brother had to stay, it was much more appealing to visit. There was a day room with DVDs, WiFi and I could watch Netflix whenever I wanted. When you are in hospital for a really long time, it’s little things like that, that help you stay upbeat.
After a month, I got told I was in remission. But last year, a routine test showed it had come back. I think I found this harder to accept than my initial diagnosis – that was a really dark time for me. I got told I needed a bone marrow transplant, and after having friends on the ward who had been through this, I knew it wouldn’t be fun. I also had to have radiotherapy, which meant I was in isolation so I couldn’t leave my room.
I’m going to need to have treatment for the next two years and I have regular check-ups. I’m still with my boyfriend who has been really supportive and I’m feeling positive for the future. I really want to help raise awareness about teenage cancer. If there’s anyone reading this that is going through something similar, my biggest piece of advice is to be open about your worries and confide in people. If you are particularly worried about a drug or a treatment, speak up. No one will judge you and it’s horrible carrying the burden of it all on your own.
When I’ve finished treatment, I hope to become a paramedic. I’ve been through so much already when it comes to medical care and I want to use my experience to help others and give back.
The chances of my brother and I both getting diagnosed with ALL is extremely rare and I have times where it feels really unfair. But, it’s brought us closer than ever as a family and I feel grateful for the amazing bond I now have with Angus.
How It Feels is a recurring blog series which aims to shine a light on people’s stories, covering subjects where voices are rarely heard. If you want to get involved, please email email@example.com