Maddy shared her story of being treated on the Teenage Cancer Trust unit, Dr.PAWPAW's official charity partner.
Maddy Elleby (18) from Surrey, was 16 when she was diagnosed with Hodgkin lymphoma. She was treated at The Royal Surrey County Hospital and the Teenage Cancer Trust unit at The Royal Marsden NHS Foundation Trust.
"I’d been on holiday to Sweden in October 2020 when I started feeling unwell. I thought that I just had the flu but it wouldn’t go away. In November 2020 when the cough still remained and I started to sound like a seagull, I tried to get a doctor’s appointment. Because we’d just gone into lockdown again, it was impossible to get a face-to-face appointment, and everything was over the phone. The doctors thought that I might have a chest infection or asthma, so I was given a round of antibiotics and an inhaler, but neither did anything. One day I was looking in the mirror and I couldn’t see one of my collarbones due to a lump, which was unusual because my collarbones had always been quite pronounced. That worried me. I also had night sweats. I convinced myself that I had cancer. I wanted to go into Medicine, so I was medically aware. The doctor listened to me and was fantastic. She got me booked into an ultrasound and an X-ray within a week and did blood tests.
"In late January, all of my family were sat around with tissues and glassy eyes. They thought the news was going to shock me, but I just said: ‘I have cancer don’t I?’. I’d already been researching wig companies and looking at videos of people having chemo. Having prepared myself helped, but it was still an overwhelming experience, and I was worried about losing my hair. I’d also just started college and made new friends, so I was worried I would have to drop out and lose my friendships.
"After being diagnosed at The Royal Marsden NHS Foundation Trust, I started chemo in February at The Royal Surrey County Hospital as it was nearer to home. I organised my chemo sessions around gaps in my class schedule and when I missed time at college, I told people I had a cold.
"I had a picc line so wore long sleeves all of the time. That was fine when I started chemo in the winter, but I had chemo through to July, so it was hard to explain to people why I was still wearing long sleeve when it was boiling. I had around 30 pills a day and my bag rattled when I put it down. I constantly thought: ‘I don’t want to get stopped on a train as they will think I’m a drug dealer!’
"As it was my first year in college, I went to all of the parties as I didn’t want cancer to hold me back. I’d just take my anti-sickness pills the next day. I had so much dramatic flair that I organised a birthday party for my 17th and invited round my school and college friends. I announced that I’d had cancer with a cake that said F**k cancer. I told them I’d just finished chemo and people couldn’t believe it. There were screams and tears and people were hugging and kissing me. I’d held it in for so long, so it felt good for it to come out.
"I got the all-clear but a month later I relapsed. I was told that I would have to have intensive chemo and spend weeks at a time in hospital. I told them I couldn’t imagine anything worse, and I’d rather die. I asked if there was anything else I could do.
"My consultant at The Royal Marsden looked into a drug trial for 16-18 year olds. I had the right type of cancer and I was at the right stage, so I got to take part. It was immunotherapy which meant my hair continued to grow back.
"While I didn’t like having to have treatment a second time around, being on the Teenage Cancer Trust unit at The Royal Marsden really helped. There were things there that I hadn’t even thought would be in a hospital. They had all kinds of musical instruments, films, activities, great food, ice lollies.
"Teenage Cancer Trust’s Youth Support Coordinator at the time was called Ella and she often came into the room to have a chat with me. She also organised for a musician to come to my room, and I got to play drums with them at The Roundhouse. Being on the unit opened doors in multiple ways. Aside from the drugs, it was great fun being on the unit. I had no responsibility or worries."
