Teenage Cancer Trust Stories: Elena

Teenage Cancer Trust Stories: Elena

Elena opened up about her experience receiving treatment at the Teenage Cancer Trust unit, Dr.PAWPAW's official charity partner. Her story sheds light on the incredible support network that stood by her side during this difficult period in her life.

Elena (19), from Ilfracombe, was 17 when she was diagnosed with metastatic ovarian germ cell cancer in November 2020. She relapsed aged 19. She was helped by Lorraine, Teenage Cancer Trust’s adopted Teenage Young Adult Clinical Liaison Nurse for North Devon, Torbay and Exeter.

Elena was diagnosed while she was studying to get into medical school.  She said: “I was 17 and studying for an exam to get into medical school when I first felt a really uncomfortable pain in my right-hand side. I initially thought it was a muscle strain, but the pain got really unbearable. I don’t normally like to complain, but I couldn’t handle it anymore, so I called 111. They recommended that I go to A&E.

“They found that I had a large cyst which was twisted around my ovary, and I needed urgent surgery in October 2020.

“I’d been introduced to Lorraine, Teenage Cancer Trust’s adopted Teenage Young Adult Clinical Liaison Nurse for North Devon, Torbay and Exeter, before my second operation. At the time I was so focused on my studies that I felt ok. I didn’t see having cancer as that big of a deal as I saw it having to get through a couple of operations and then I could just move on. I was grateful that I hadn’t needed chemotherapy or radiotherapy.

“When things were less busy at the start of 2021, I started thinking about it all more and what I had been through dawned on me. My mental health had taken a dip and I had post-traumatic stress from the operations. Having already been introduced to Lorraine, I knew that I could turn to her. We started talking weekly over the phone. She was there to listen to my feelings and give me advice. 

“She asked me questions which prompted me to think about things differently. As well as talking about the cancer, we also talked about everyday things like my family, and she gave me relationship advice. Instead of seeing me just purely as a patient, she looked at me as a whole. Lorraine got to know me and remembered the things which were important to me.

“Because of her job, she hears the experiences of a lot of young people. Without giving away confidential information, she talked to me about different people’s experiences to reassure me that I wasn’t alone in my experience. I was worried that I was alone, but she told me that that was not uncommon. I thought that I was going crazy, so knowing that other people out there were feeling the same way as me helped me feel a lot better. 

“Lorraine also invited me to meals with other young people around Exeter who had been through cancer. This was really important as I wasn’t treated around people my age. The first meal I went to was last Christmas, and I started to get to know some familiar faces who continue to go to the meals, so I started to recognise people really quickly.I've made some lovely friends and we went on the Ellen Macarthur Trust sailing trip together because Lorraine referred me on to that too. It was the first time I got introduced to other young people who had gone through similar experiences and I was just so pleasantly surprised about how much we could relate to each other, and also have a laugh about things that others would never have imagined we might have found funny about our experiences. Some of the things we laugh about are quite dark and some people might think it’s messed up, but people who have cancer get it. I say things I can’t say to other friends and everyone there listens. I feel comfortable with them and I can feel the warmth of feelings around the table.

“Talking to them reassured me that other people had been through similar things and had similar thoughts. It isn’t all doom and gloom either; we mostly talk about our day-to-day lives and have a good laugh too. We’ve stayed friends and are a tight group. I absolutely loved the events which Lorraine organised.

“Lorraine also hugely supported me in referring me to grants, for example the YoungLivesvsCancer one, or the PIP and Universal Credit scheme, which I would have had no idea about otherwise. She filled out loads of forms which I just wouldn't have had the energy to do whilst going through treatment. The financial support makes such a difference, especially because of the cost of travelling to appointments and not being able to get a job during treatment. 

“After I finished my A Level exams, I felt I was ready to move on. Lorraine had helped me so much, but I felt like I was in the right place to say goodbye and get on with my life post cancer. I pretty much forgot about having cancer, bar the scars that I have as a reminder. But in August 2021 I became breathless, and I had a cough that wouldn’t go away. I convinced myself I had long Covid. It got to the point where I couldn’t walk up the stairs without stopping every few steps, which isn’t normal for a young person. 

“I started studying medicine in Edinburgh and I had to spend a week in bed because I felt so ill. I waited for a GP appointment and asked for an X-Ray. I was transferred to A&E, where they were asking me about my medical history, but they weren’t giving anything away. I rang my mum to say that I wasn’t sure what was happening, and I was scared. She got the first flight to Edinburgh.

“Initially, they only told me that I had pulmonary embolisms, which I thought sounded really serious. The same night, they told me that I might have lymphoma. They didn’t say the word cancer, but I knew that’s what they meant. Or they said my metastatic ovarian germ cell cancer might have come back.

“I went into my biopsy the next day hoping that it was the metastatic ovarian germ cell cancer again. When they told me it was the same cancer I was reassured. That may sound weird that I was grateful for that. A second type of cancer less than a year later would have felt even more unlucky.

“I was transferred by ambulance to the Western General Hospital. The cancer was really rare, and they had to ring a specialist. He was on holiday, but he answered their questions, and they started me on emergency chemo treatment. I wanted to carry on at medical school alongside my chemo, but there was no way I would be able to keep it up, so I had to drop out. 

“I had the treatment up until Christmas 2021. I had my last session on Christmas Eve. I remember driving home for Christmas feeling really ill. I had extreme fatigue and spent a lot of time on the sofa. I was throwing up around five times a day. My parents are Spanish, and we have family there and I really wanted to go there like we usually do, but we couldn’t. Then my mum found out that she had Covid, and I spent the week up to New Year’s Eve isolating in my bedroom. I didn’t think my Christmas could get worse than 2020, but I was wrong. 

“We’re hoping to go to Spain for Christmas this year (2022) to put the bad Christmases behind us. My friend Laura has been amazing throughout my treatment, and we are going to watch The Nutcracker at The Royal Opera House. 

“I spent New Year’s Eve chatting with friends and it was nice to be able to do that and to be around people.

“I had five rounds of even more intense chemo until February then started immunotherapy. I have that every three weeks and travelling down from Edinburgh disrupts my life a bit. Three weeks seems to come around really quickly. 

“The immunotherapy has given me menopausal symptoms because of a hormone imbalance. I’ve not had a period in years. I lost my hair during the chemo but that is growing back.

“I am looking forward to getting my life back on track and have been able to start studying again. I do have PTSD and trauma from having to drop out and being ill and I worry that it might happen again. It makes me feel nervous and anxious. I’m happy to be back though so I’m trying to just focus on my excitement for the future.

“I spoke to Lorraine before I went back to uni, and she was able to give me a bit of advice. She knows that I want to be able to do everything, so she told me not to set my expectations too high while I am still on treatment. I needed to hear that from someone outside my family. I also spoke to her about having social anxiety. I’d spent four months in bed while other people were getting on with their life and I struggled to get back into the social scene.

“I also worry about how much to tell people about my cancer when I meet them. I don’t want to tell them too much about what I have been through as I don’t want my cancer to define me, and I don’t want to be judged. I talked this through with Lorraine.

“I’m grateful to have had Lorraine’s support. Without Lorraine I think things would have been so much lonelier. I spent so much of my time in hospital with middle aged women. It was so isolating. Cancer wasn’t something I expected at my age and then suddenly it was a huge part of my life. Lorraine allowed me to realise that other people go through the same thing at my age, so I didn’t feel so alone. She has been a big part of my cancer experience.”

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