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I thought I had flu but when I started laughing like a squeaky seagull I knew something was seriously wrong
Doctors say there is one key common symptom to look for of the deadly disease
A TEENAGER has revealed how she was given a devastating diagnosis at just 16 years old after her laugh started to sound like a “seagull”.
Maddy Elleby, now 18, from Farnham, Surrey, first started feeling unwell while on holiday in Sweden but brushed her symptoms off as the flu.
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She started to get a squeaky voice after her travels — months before she was diagnosed with Hodgkin lymphoma, a rare cancer that affects the lymph nodes, in January 2021.
Initially, doctors gave her antibiotics and inhalers but neither kept her cough at bay and she soon began to notice numbness down her arm and a lump on her collarbone.
She turned to the internet, checking her symptoms against a variety of diseases, and soon rushed back to the doctor — where she was given the heartbreaking news.
Maddy said: “I did what most people do and Googled my symptoms.
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“It brought up glandular fever and mono but I went down a wormhole and landed on a page for Hodgkin’s lymphoma and all of my symptoms matched.
“That worried me, along with the fact that I was feeling under the weather and had a persistent cough.
“The lump I found on my collarbone was unusual because my collarbones had always been quite pronounced.
“I went to talk to my older sister and said: ‘I think I have cancer’.
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“Typically of an older sister, she said: ‘Shut up, you're being so dramatic you don't have cancer — stop trying to freak me out’.”
I’d already been researching wig companies and looking at videos of people having chemotherapy
Maddy
Around 2,100 Brits are diagnosed with Hodgkin lymphoma every year and it is more common in people aged 20 to 40, or over 75.
It develops in the lymphatic system, a network of vessels and glands spread throughout your body.
The cancer affects disease-fighting white blood cells and early signs include a painless swelling in a lymph node, usually in the neck, armpit or groin.
Once Maddy’s lump began to grow, she went to see the doctor again — who sent her for a neck X-ray and ultrasound.
She said: “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.”
What are the symptoms of Hodgkin lymphoma?
The most common symptom of Hodgkin lymphoma is a swelling in the neck, armpit or groin.
The swelling is usually painless, although some people find that it aches.
Some people with Hodgkin lymphoma also have other more general symptoms.
These can include:
- night sweats
- unintentional weight loss
- a high temperature (fever)
- a persistent cough or feeling of breathlessness
- persistent itching of the skin all over the body
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Sadly, Maddy received confirmation of her suspected diagnosis.
She said: “All of my family were sitting 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 chemotherapy.
“Having prepared myself helped but it was still an overwhelming experience and I was worried about losing my hair.”
Maddy chose to only tell the news to her closest family and friends.
Hiding something huge
In February that same year, the student started chemotherapy at The Royal Surrey County Hospital and organised her sessions around her class schedule.
She was diagnosed as stage 4, meaning the cancer had spread to other organs or bones.
Maddy said: “I couldn’t face the idea of having to support other people and making sure other people were okay.
“My family all reacted differently — I got a lot of gifts. At times I felt like I was comforting them more than they were comforting me.
“I decided to just carry on at college and not tell people. I shaved my hair and wore a wig and pretended I’d had a haircut.
“I had a picc line catheter so I wore long sleeves all of the time, too.
“That was fine when I started chemotherapy in the winter, but I had chemo through to July, so it was hard to explain to people why I was still wearing long sleeves when it was boiling [outside].
“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.’”
After finishing her chemotherapy on July 19, Maddy organised a 17th birthday bash and announced to the remainder of her friends that she had been going through cancer treatment.
And she finally received the long-awaited all-clear from doctors.
Maddy said: “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.”
Fast resurgence
Sadly, the feeling wasn’t to last — as the teen found another lump in her collarbone in October.
She said: “It was actually my first day at my new job. I felt it in the staff toilets and had a breakdown because I knew it was back instantly.
“The staff at the hospital didn’t believe it could be back so soon, but I knew I was right.”
Maddy would have to undergo intense chemotherapy once more and spend prolonged amounts of time in hospital.
I would want anyone struggling with cancer, newly diagnosed or not, to be assured there is a bright light at the end of the tunnel
Maddy
But, speaking to doctors, she found out about a drug trial and was eager to participate to beat the disease once and for all.
She said: “My consultant at The Royal Marsden looked into a drug trial for 16- to 18-year-olds.
“I had the right type of cancer and I was at the right stage, so I got to take part.
“The first scan showed that it was working well, but the second scan showed the progress had stopped and the tumour [was] growing back.
“They had to switch it up and I had to have chemo, immunotherapy and then a stem cell transplant in May 2022.”
Despite the horrors she’s gone through, Maddy says being on the Teenage Cancer Trust's Unit at The Royal Marsden Hospital has "opened doors in multiple ways” – with her getting support and entertainment from the caring team.
She said: “They had all kinds of musical instruments, films, activities, great food and ice lollies.
“Aside from the drugs, it was great fun being on the unit. I had no responsibility or worries.”
Two years since her diagnosis, Maddy is once more cancer free.
She will get scans every three months for a year and then once every six months for three years after that.
While receiving treatment, the student repeated her first year at college and has now gone off to study medicine at the University of Liverpool.
She added: “People thought that I would be put off, but I still want to do medicine, just not oncology.
“That is too close to home and I’ve had enough of cancer.”
Maddy is also backing Teenage Cancer Trust’s new ‘What not to say’ campaign, which launches today (8 November) with young people like herself sharing the most uncomfortable, bizarre and insensitive things people have said to them during cancer treatment.
She has shared how phrases like “Can I try on your wig?” and comments about weight fluctuations during treatment caused upset.
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But because talking about cancer can be awkward, Maddy and others are also sharing tips about the most helpful things people said or did to help them through treatment on the charity's website.
Maddy said: “I would want anyone struggling with cancer, newly diagnosed or not, to be assured there is a bright light at the end of the tunnel.”
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