Elisse’s story: I was diagnosed with lymphoma just before my last year of uni

Just as she was about to start her final year at university, Elisse was diagnosed with non-Hodgkin’s lymphoma at 21 years old. She started treatment close to university in Cardiff but then had to be transferred to the Royal Marsden Hospital in London to be close to her family home.

Elisse was supported by a Young Lives vs Cancer Social Worker who provided grants to help with the costs of cancer and signposted her to other charities and groups offering support too.

Symptoms

“I was on holiday this time last year in Spain and I was swimming in the sea and I got water stuck in my right ear and it just wouldn’t leave. It just persisted and then when I went to uni it got worse, my ear got infected, I was in and out of the doctors on different antibiotics trying to figure out what it was. My throat was swelling, my tonsils were constantly swollen, I couldn’t hear out of my right ear, my nose was blocked – this was ongoing for a month.

“My throat got really bad, just going up the stairs was really tiring. It swelled up really badly one day so I had to go to A&E. They were putting cameras down my throat, taking bloods from me. Then they said they were going to have to do an MRI scan to see what it was. They were going to have to biopsy to see what it was.”

Diagnosis

Elisse and her mum went to the hospital two weeks later to find out the results from the biopsy.

“We went in and they just told me, ‘it’s not good news, Elisse has non-Hodgkin’s lymphoma’ and at the time I had no idea what that is, I needed to hear the word cancer for me to realise but when my mum started crying I realised ‘ok, this isn’t good’

“The same day they told me I just remember crying to my mum saying ‘I don’t want to die’. It was so tough and I was thinking ‘i can’t believe this is happening to me’ I really didn’t want to die. I was just thinking ‘I’m 21, I’ve got so much ahead of me’. When she said positive mindset is everything, I was so positive during my treatment, that day I was like ‘I don’t want to die’ but afterwards I was like ‘I refuse to die, I have so much ahead of me, so much life ahead of me, I will get through it, it will be horrible but I will be ok’.

Chemotherapy

Elisse was told she had to start chemotherapy right away. Her care was being transferred to London, so she could move home to live with her mum but she had to have her first round in Cardiff so they could start as soon as possible.

“When my oncologist said you need to stay in Cardiff I ended up getting sepsis after my first chemo so I was in hospital more than I was out. After the first chemo I felt so much better, my tumour shrunk so much more but where it had started growing it had left a hole so I couldn’t speak for ages, I couldn’t swallow, I couldn’t eat they were saying I’d have to have a feeding tube – so on top of sepsis I had this hole in my throat which they said they couldn’t stitch up during chemo because I’d be more likely to get sick and wouldn’t recover because your immune system is really messed up. They said they’d have to wait and hopefully it would heal on its own. Luckily after a week or two I did start speaking better but I can still see the hole now but I can speak and eat and drink.”

Elisse went on to have seven cycles of chemotherapy and finished treatment in March 2022.

Feeling left behind

“I had my mum and my family trying to find all these hobbies I could do and they would suggest things like drawing or painting or making jewellery and I was just like I don’t want to do any of that. I don’t want to sit at home and make candles that is not what I wanted to do. I want to be like everyone else and I felt like I wasn’t.”

Elisse also struggled with hair loss during treatment too.

“Especially more when I lost my hair on my head people would look at me and I just knew people would be like ‘she’s got cancer’. I was very lucky I didn’t lose all of my eyebrows or eyelashes but all my hair on my head was gone – I couldn’t leave the house bald I would have a hat on but still people can tell. All those things I found tough because it was yet another reminder I had cancer.”

When the treatment ends

After her treatment had finished, Elisse found it tough to step away from the hospital and process what she had been through.

“At the start I thought I’ve got so much ahead of me I need to be strong I need to get through it and all of a sudden when I was coming towards the end it just hit me everything I’d done and everything I’d been through.

“Coming towards the end of treatment it’s scary because I’m not going to be in hospital as much, I’m not going to be looked after, I’m not going to be getting chemo, what if it comes back? You’re under a lot of observation and they send you emails and everything and then all of a sudden you go from that to ‘We’ll see you in three months’.

“As much as I like not having to go through chemo it’s also scary because I’m not under that supervision. It’s all been taken away and I think ‘what am I going to do now?’ It goes from that to being back to normal.”

Vital support through it all

Lyn, Elisse’s Young Lives vs Cancer Social Worker, was a great support to her during and after her treatment, and she provided grants to help with the costs of cancer as well as signposting her to other charities and groups offering support too.

“When I felt like I needed support they’ve always provided me with different charities or help with the therapy side and different links and places I can go – letting me know of all of these opportunities I could sign up for.”

Many people struggle after treatment

Our latest research shows that Elisse wasn’t alone in finding the period after treatment to be particularly tough. Anxiety levels for young people who were treated for cancer are 36% higher than the population at large, and this remains true more than six years after treatment.

With our ambitious North Star vision, we’re committed to transforming the future of cancer care for young people like Elisse – from before diagnosis to post treatment.