How a health scare taught me to advocate for myself

Editor’s note: This story shares experiences of sudden illness, time in hospital, surgery, and a tumour diagnosis. Please take care while reading if these topics are sensitive for you.

Over the summer, I signed up for the Irish Life half-marathon set to take place in September of this year. It was the end of June, and I hadn’t had a chance to run in a while due to family issues: my grandmother was very ill for two weeks and then passed, and I was taking time off from my part-time job. I had also been sent the invitation for my first driving test, which I felt anxious about, but I did book.

So it was time to get back to running. I had left my house and run to the crossroads at the end of the road when I felt something was stuck in my throat. I couldn’t stop coughing as it felt like I was choking on something.

I hadn’t had a cold, and I sensed something was wrong, so I put my hand over my mouth, and a handful of blood was coming out. Looking back, I think my reaction was a bit silly. I was more embarrassed about the neighbours seeing me cough up blood than I was concerned for myself.

My admission to hospital

Subsequently, my family called an ambulance for me. I spent 21 hours in A&E as they found something in my blood test. They then did a CT scan, which found a nodule with a cavity in my top left lung. It took over four hours to get my bloods taken. When I finally asked when they would take them, they realised I hadn’t been properly registered.

The funny thing is, I had experienced no symptoms of illness other than the blood. So they brought me to a separate room to tell me they were gonna admit me, and the on-call doctor came in full personal protective equipment (PPE) – this made me worried I was infectious.

I was overwhelmed and couldn’t stop crying. I was tired, and my mum and my dad were also with me, exhausted and unable to sleep with the beeping lights, the noise, and the upright chairs.

I was struck by the idea that you could be sick without realising initially, and how quickly a scenario could change. They had told me I had to get a biopsy done, which would take a week to get done. As a person who has never been to hospital before, I was confused by everything.

The first day, the consultant assigned to me hadn’t arrived, and whenever I’d ask, I would be told sometime this afternoon or in a few more hours, yet I was still waiting. In fairness, the nurses were lovely and kind, which did help ease my nerves.

Everything hit me, however, after the first biopsy. It was around 9 or 10 o’clock. I had been sitting in my bed, and the nurse attempted to give me antibiotics for my fever through my cannula in my arm,  which was really sore.

I told her it hurt, but I don’t think she realised to what degree. My arm started to swell up, and the antibiotics were leaking out. After she had left, I fully broke down. I couldn’t stop crying and hyperventilating. I was told throughout my first time in hospital that they had to rule out lung cancer, even though it would be unlikely. This only escalated my stress. My dad had come into hospital every day, even when I said not to, as it was making me stressed at times.

How the rest of my summer was impacted

I had gotten two biopsies in the end, as they couldn’t reach the nodule in my lung the first time. I had also changed rooms four times within two weeks, and as someone without private health insurance, this meant I was in rooms of six people.

Once I was released, I had two weeks left to practice for my driving test, which I ultimately failed. I had my 21st birthday, which many of my friends couldn’t attend as they were abroad, at a wedding or had family commitments.

When I was practising for the test, I was yelled at by someone blocking traffic on the road. She was yelling at me: “Who do I think I am?” and standing in front of the car. I had to cancel a concert, a trip to Edinburgh and not work for a few weeks. I grew separated from some friends, and my self-esteem was quite low.

My grandad also started to get quite confused and was admitted to hospital. This was an added source of stress for my family.

The lung resection surgery

Once, the doctors had tested the sample from the biopsy, two or three weeks after I was called back in. I was diagnosed with a haematoma, which is  minor and described as an abnormal collection of blood, but usually goes away by itself.

My original consultant was also an oncologist, so my consultant was changed to a cardiothoracic surgeon. He recommended I do the lung resection as my haematoma had a cavity, which posed other health risks.

I had decided to do the surgery. It had required me to stay in hospital for at least three days. Due to my previous experience at the hospital, I was also aware of the fact that if I didn’t know something, it would be my responsibility to check. For example, I wasn’t aware of how many people would be present in the room surrounding me. From my recollection, they said the surgery was three hours long.

Once the surgery had finished, I was admitted to the Acute Care Unit (ACU). I couldn’t really move much because of the pain. I had monitors on my chest, a nerve blocker tube going into my back to block pain, a chest tube going into my ribs to collect fluid, and I was on medications such as oxynorm and pregabalin.

They had removed the nodule and some of the surrounding area to lessen the chance of recurrence, which meant they took 4 per cent of my lungs away. I had four incisions across my left side and a hole for the tube.

After the surgery

After I was admitted, I couldn’t bend down or twist my back. Sleeping flat on the bed hurt, and I felt out of breath. So I had to prop my pillows up. I did limited activities for the next two weeks, mainly staying at home. I had presumed that during the meeting with the surgeon, they would just say the surgery went well and you’ll be grand from now on. They had informed me that the surgery was successful; however, it was not a haematoma after all.

I had an Inflammatory Myoblastic Tumour, which is a rare type of tumour, 1 in 1 million. It is categorised as borderline cancerous, and so it turned out that the option surgery wasn’t an option, as it would have impacted my lung capacities.

This had taken me by surprise, as it had been treated as a minor condition for the last few weeks. It also turns out that it returns, so I’ll have to get CT scans done every few months. However, I was lucky that the tumour was quite small and that it had been caught and removed.

Where am I now?

A week after the new diagnosis, I had to start my internship, which I am currently enjoying. I am now able to go out more and hang out with friends, as well as go back to my part-time job on the weekends.

This summer didn’t go the way I had initially hoped. It was difficult, isolating, and full of unexpected turns. But I’ve learned that healing isn’t just physical, it’s emotional too.

I’ve learned to advocate for myself, to ask questions, and to be patient with the process. I’m still recovering, but I’m proud of myself for getting through this summer relatively okay.

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