Posted on Friday 17 December 2021
Liv’s story: “My diagnosis affected my friendships and confidence. I really struggled.”
Liv, 15, was diagnosed with Langerhans Cell Histiocytosis, a very rare condition, when she started suffering from headaches and swelling on her head. The impact her diagnosis had on her friendships, school, body image and confidence was something she could never have anticipated. Here, Liv shares her story in her own words.
“It was around January and February this year that I first noticed something wasn’t right. I started getting headaches every day. I thought they were just normal – but then I was really tired as well. My mum and dad said maybe I wasn’t drinking enough and all that – as parents do.
We had a telephone consultation with our family GP and they thought it might be to do with my teeth and so my mum took me to the dentist. He couldn’t find anything wrong, but thought it might be an infection in my glands, and prescribed antibiotics. It wasn’t until I saw another doctor that she said she wasn’t happy and said something wasn’t right.
After more consultations and hospital trips, the doctors described me as a ‘red flag’ situation and I had high blood pressure. At this point I was still going to school, but my headaches were killing me, so my mum took me straight to A&E. More days passed and eventually I was sent for a CT scan. That’s when they found a hole in my skull and everything changed.
The doctors said the cells in my brain had turned ‘rogue’ and had started eating away at my skull. I had to wait another month to be seen though and then eventually I had an operation on my head. They took the cells out and put a metal plate over my skull. I had to have 60 stitches.
The doctors told me and my family I had Langerhans and said we would know more after the operation. I had to have multi-body scans to check the rest of my body and had 24 X-rays and four ultrasounds in one day. Once the results came in, my mum was called back into hospital and they told her it is multi-system and classed as cancer.
Because I wasn’t prepared for the news it was a shock. I was fine until it was classed as cancer. Because when you think cancer, you think about those who have it really bad and go bald and I didn’t know what Langerhans Cell Histiocytosis was and that didn’t matter much.
I had to have chemotherapy and now I’ve started the maintenance phase and take tablets every night. My hair is starting to fall out. It is not all falling out, I am not going to go bald, but it bothers me and it’s horrible to watch it come out and when I brush my hair.
The worst part of treatment has been the steroids and the side effects. I’ve had a full body rash, steroid bloating and my tongue shakes. I couldn’t eat foods I would usually like, and I had a lot of different cravings. It was quite funny in the beginning it was like I hadn’t tasted food before, and then it made me really emotional making me cry, over salad!
My diagnosis affected my friendships and confidence. I used to go out with my mates every night, but because the steroids put weight on me, I don’t go out because I’ve lost confidence. I still don’t want to go out, or even shopping, but I guess once my bloating has started to go down and when my bloat goes I will go out more. It’s just horrible, this time last year I had a photoshoot for my birthday and it was the happiest I have ever been.
Getting diagnosed and going through treatment was horrible because I lost all my mates. I really struggled. I went from being really skinny to the biggest I’ve ever been and thought what are people going to think of me. And then I felt really lonely, I’m just stuck in my room and distanced myself from everyone, which made it worse having no one to talk to.
I had a hard time with friendships and arguing. With school I didn’t want to go back. I didn’t fit into my old school clothes. I don’t feel comfortable wearing skirts. You can see it in my face and everything. I am covered head to toe in stretchmarks. I worry are people going to see my stretchmarks in P.E.
On social media it is hard – I had a ‘this day a year ago’ and I look so different. My mum and dad were saying why don’t you share your experience and not many doctors know about it. Someone I follow who had cancer, Leah Smith, shared her experience and that helped me. She had bone cancer. We would be driving to hospital and I would be looking at Leah’s videos and stories and it helped.
I fell out with all of my friends when I was diagnosed. Not a single friend was there for me when I started treatment. I went into all of this with no one. But Peggy, my Young Lives vs Cancer social worker, would just sit and listen and she was my ‘someone’ who was there for me. As a friend. It was nice just feeling you had someone there and not in a horrible way but who wasn’t a parent.
Going through what I’ve been through makes you realise what’s important in life. Because I can’t do stuff I used to do, it makes you realise how important it is. Like when I go on walks or just go up the stairs, I struggle to go up without getting out of breath now, and when you’re struggling, it’s like oh, it’s important.
When I was diagnosed and off school, my mates became closer and left me out. It made me realise the people who aren’t there for you and drop you – they aren’t there for you even if they act like they are.
I know people who are overweight in school and I know how people talk about them at school and I don’t want that happening to me. I used to wear leggings and crop tops and now I only wear oversized things. We go out at night to walk the dogs because I don’t want people seeing me from school. I will work at it. I will be more confident.”
Liv’s mum, Claire added: “It is every parent’s worst nightmare to hear that news about your child. You go into fight mode. You have to square your shoulders and think what have we got to do to get through this. Another hard part was sitting my mum down and telling family. It was really hard going over and over it.
We first met our Young Lives vs Cancer Social Worker Peggy maybe in June or July. I was looking for help for Liv because I was worried about Liv’s friendships and I hadn’t had a referral from hospital. We applied for help with transport costs. Peggy got in touch, and she was somebody to talk to.
Peggy has been great to help for fighting the system. It is amazing from a financial side how crippling it can be. The trips back and forth, the food, the hotels, the clothes. We aren’t poor, but not rich either, we live to our means. It is a two hour trip each way to hospital for Liv’s treatment.
When Liv needed an operation or to be in hospital early, we reached out to Peggy and she got us in to Clic Court and it was absolutely fantastic. Liv and I had the Home from Home to ourselves and lay on the sofa together and the lounge is gorgeous.
It massively helped us. When you are first diagnosed you are really hit hard with it and it takes a while to find the right help for you, knowing you’re not alone.”