Thymoma symptoms and diagnosis
In the year running up to my diagnosis I’d been losing weight steadily, but I’d been working 12-13 hours a day as a waitress, so I put it down to that. I’d also been having night sweats but didn’t think much of it. In hindsight, they were symptoms of the cancer.
I woke up the day after my graduation feeling ill and with pains in my abdomen, so I assumed it was a hangover. The next day, the pain got steadily worse, and it was really tight and sore. I thought: ‘This doesn’t feel right’.
I was working for Bupa at the time, so I asked one of the GPs to look at me. He advised me to go to the hospital if I still wasn’t feeling better that night.
I went to Leeds General Infirmary to get it checked out. They did a urine test and felt my abdomen and initially thought that it was a stomach ulcer. I was sent home with painkillers and told to go to St James’ if it hadn’t gone away in six to 12 hours. At St James’ I had an X-Ray and it showed that I had a shadow on my lung, so they thought it might be pneumonia. I was admitted to hospital and had a CT scan then a biopsy.
Due to Covid regulations, my mum wasn’t allowed to visit me, and I had to go outside of the hospital to see her, but then I was asked if there was anyone who could be with me for the results. I knew that it wouldn’t be good news.
We were taken into a day room and told that they thought I had malignant lymphoma. We both started crying. I’ve forgotten a lot of things from that day, but I remember mum saying: ‘Malignant is the good kind, isn’t it?’ and them saying: ‘No, it’s not the one you want to have, that’s benign’.
Following a surgical biopsy, I was diagnosed with thymoma. The thymus gland is in the middle of your chest. It plays a big part in your immune system while you’re growing up, but once you’re in your late teens it’s redundant. In a way I was relieved though as it had taken weeks to find out what type of cancer I had. It meant that I could then do some research.
Support from Teenage Cancer Trust
I first went up to the Teenage Cancer Trust unit not long after I was diagnosed and the fact that I had cancer was still sinking in. Being on the unit made it feel very real and I didn’t want to interact with other people. I did appreciate how bright and colourful it was though. The day room on the unit was a stark contrast to the day unit where I got my diagnosis.
I met Padma, Teenage Cancer Trust’s Youth Support Coordinator, and Robyn, their Clinical Nurse Specialist at the time. They were both really welcoming. Padma also came to see me while I was having a biopsy. Meeting Padma and Robyn so early on helped as I knew who I would be seeing during treatment. It meant I wasn’t as nervous when I had to start treatment.
Padma has been a massive help to my mum and stepdad too. She was really invaluable. She introduced me to other young people in the day room and having people who knew what I was going through really helped. Chemo is still awful, but we could understand each other. Padma also organised activities like pottery painting and games of Monopoly. It helped pass the time.
Robyn was fantastic too. She gave me her work mobile number and said that I could contact her whenever I needed her. She talked me through the potential side effects. As I like to be prepared, this really helped. If I ever had any questions, she came back to me really quickly with the answers. She alsodid my injections for the Prostap, the menopause injection, essentially inducing a mini menopause by causing my reproductive organs to hibernate to preserve my fertility.
She also explained what it was like to get a PICC line as they were struggling to get the needles into my veins after my first round of chemo.
When Robyn was leaving, she made sure that she introduced me to Shona, the new Clinical Nurse Specialist. She brought her to my house a few times so that I could get to know Shona. It also helped Shona learn more about thymoma as it’s really rare.
If I hadn’t had Padma, Robyn and Shona my experience would have been pretty miserable. The unit felt like a second home for my mum and I and was a safe space. I still go in and say hi to the staff when I am having check-ups. It’s nice for them to see me looking more myself too.
I can’t imagine having to go through cancer without being surrounded by other young people on the unit. Having spent time in different hospitals, it made me realise how invaluable that is.
Support from my mum
My mum lived in Nottingham, where I was from originally, but she was signed off on sick leave so she would stay for a week while I was having my chemo and in the days after while I was recovering from the side effects. I was so glad that she was there as when you feel poorly you always want your mum. I wouldn’t have been able to do it without her. She gently encouraged me to eat and drink. I was really weak, so she had to help me to the toilet and wash my hair. I’d only be awake for a couple of hours and then I’d need to sleep again.
Support from friends and flat mates
My flat mates were really supportive. As soon as I was diagnosed, I told them that I wanted them to treat me the same. I was still their friend; I’d just have less hair. I decided to shave my hair off and they helped with that.
They came to visit me at the hospital and were really supportive of my mum who was staying in our flat to help me. There wasn’t much they could do but they did little things like making sure we had Earl Grey teabags in as they’re her favourite.
They messaged me while I was in hospital and got me a parcel of sweets, chocolate and things to do to pass the time.
They even brought my cat to the hospital one day to cheer me up. My mum said that I needed to go outside to meet my friends, and I was complaining that it was cold, and we should meet inside, but when I got out, I saw that they’d brought Taco, my cat. It was really sweet and put a smile on my face. I also had a blanket with Taco’s face on it which I took to chemo with me.
One of them is a pharmacist, so he did my blood thinning injections for me. He also got the train to visit me in London when I was recovering from surgery.
Thymatic surgery complications and recovery
After I finished chemo, I needed to have surgery. I decided to have Thymatic surgery at St Thomas’ in London. They talked me through the side effects, including a five to ten percent chance that I may die, and a ten percent chance of life-changing injuries, and a chance that they’d need to take the whole of one lung.
The operation was originally scheduled for 15th December, which is my birthday, so I was gutted. Because of the strikes it was put back to 21st December, which meant I was in hospital over Christmas.
I was in theatre for 12 hours while I had thymatic surgery. First they did a sternotomy, cutting from the top of my sternum to the bottom, and then a right thoracotomy where acut is made between the ribs to see and reach the lungs and to take out my thymus.
I also needed resection and reconstruction of my Superior Vena cava, a vessel in my heart, and my right lung was removed. I had right hemi-diaphragm resection and reconstruction.
The operation finished late at night after visiting hours, so my mum was told to come the next day, but as she was leaving her accommodation to come in, she got a call to say they’d had to take me back into surgery. An X-Ray had showed that my heart had moved into the empty space left by the last surgery. I was in surgery for seven hours while they meshed my heart into place.
I hadn’t woken from the first surgery and only woke a few days later on Christmas Eve. I was vaguely aware of my mum having been there on the 23rd talking to me and squeezing my hand. My dad was so upset that he couldn’t even enter the room.
I was in ICU for three days and then high dependency for about a week, before I was moved to Guy’s Hospital. I was there for another week and a half.
It was hard being away from the Teenage Cancer Trust unit and it made me appreciate the unit even more. It was an unfamiliar environment and there was no-one my age about. Everyone was triple my age or older and it made me miss being treated with people my age.
Because of the complications, recovery was harder than I thought it would be. I moved back to my mum’s house for a few months. Lots of my friends from home were away at uni, so I didn’t really see anyone apart from my immediate family. I lost my independence which was really hard because I was a really independent person.
Where I am now
I was due to start teacher training in 2022 but I put it off as I didn’t want to start during Covid, and then I put it off again in 2023 because I didn’t feel strong enough. Recovery was harder than I thought it would be and I needed to make sure I was back to full strength. I want to teach primary school age so there’s a lot of germs and I need to build up my immune system again.
I’m now working part time for a friend who boards, grooms and walks dogs. It is nice and flexible, and it helped me to build my strength up. Because I only have part of a lung, it’s important for me to exercise slowly.
