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Fear of the Unknown

Last year I encountered one of the most emotionally challenging health issues so far. In September 2020 I was unwell with COVID symptoms. I was resting at home one day when I stretched my arms and spotted a raised area on my upper left arm. I immediately felt it and my heart sank. It was a hard lump and from what I could feel, it was large. I told my mom and within hours, I was in a face-to-face appointment with a doctor in one of my local practice locations specifically for people with COVID symptoms. I really like that they’d set this up so everyone in the practice area could get medical help if needed.


Because of the pandemic I had to go in alone. The doctor did a physical examination and recommended I speak to my specialist in Manchester as soon as possible along with getting a COVID test, which I had already booked in for just after the appointment. As soon as I got home my mom and I emailed our specialist about what was happening, along with photos of the lump for reference. 2 days later I was on a conference call with him. He asked me about my pain levels and symptoms prior to discovering it. What surprised him was that the only symptom I could think of was pain in my elbow, which I initially put down to me pulling a muscle at my scare acting job.


After further discussion and because my COVID test came back negative, he booked me in for a face-to-face appointment a week from then. I was extremely impressed with how everything was handled so quickly. But I knew why they were making it such a high priority- despite knowing about my Neurofibromatosis (NF), my specialist knew by the size, speed of growth and feel of the tumour that there was a chance it could be cancerous. I also had those worries- all my other fibromas (tumours) had been soft so this change was rather alarming to me.


Fast forward a week and I was up in Manchester being examined by my specialist. Once he had done a physical exam, he reassured me and said it was highly unlikely to be cancerous. I was so relieved as my mind had been plagued with worry ever since I found it. He then referred me for an MRI scan of my arm and an appointment with the top plastic surgeon in the area. The scan was completed a few weeks later which confirmed a 5cm tumour sitting on my upper arm. Based on the scan they concluded that it wasn’t sitting on any major nerves.


A few months later, I was in a consultation with the plastic surgeon. He examined me again, completed some tests to see if it was affecting my nerves and decided surgery was the best option. I was beyond terrified but I knew it had to be done. They couldn’t guarantee when it would be but they would contact me as soon as they knew anything. A few days later they told me my surgery would be in late March, I would need to isolate for 3 days before and get a PCR as I would be staying in overnight after my procedure.

The weeks before my surgery flew by and before I knew it I was sitting in a side room waiting to go back for surgery. Thankfully my mom was with me otherwise I would have made myself sick with nerves. It seemed like I was waiting for hours, but it hadn’t been long at all. Time seems to move in mysterious ways when you’re nervous and waiting. Before I went back for surgery my surgeon came to see me, explained what he was going to do and reassured my mom that he would contact her as soon as I was out of surgery.


Not long after that I was on the operating table. The next thing I know I’m waking up in recovery. It was a strange sensation to be lying on the operating table one minute and the next I’m not. It didn’t take me long to come round from the anaesthetic and I was soon back on the ward. The staff from pre- to post-op were incredible. They always made sure I was ok, allowed me to ask questions and had my best interests at heart.

Whilst on the ward, I relaxed as much as I could so I didn’t aggravate my arm. Unfortunately I didn’t sleep very well due to regular observations and the general noises of the hospital. Luckily, I was able to join a zoom with my friends, watch Marvel movies and listen to audiobooks. I am so grateful to have had people there to support me and made me forget about everything for a while. The next morning my surgeon came to see me, where he told me the lump was a benign peripheral nerve sheath tumour. These tumours often create spider like extensions and wrap round nearby structures. From what I was told the tumour hadn’t done that yet, but it had been sitting on my ulnar nerve (one of the main nerves in the arm) so they were shocked I didn’t have more symptoms apart from the pain in my elbow.


All in all I feel extremely lucky to have had such a brilliant team who made sure everything was sorted in a timely manner. Despite the pandemic they were able to diagnose and treat me within 7 months. This may seem like a long time but considering the way the world was I was very happy with this. I am also grateful that the lump wasn’t anything more sinister. After losing a family member to cancer 4 years ago and having an increased risk of cancer due to my NF, it was a big worry. I don’t mean to sound like a broken record when I say this but after almost losing my kidney and finding the tumour in the space of 6 months, I have found a new perspective on life. I’ve stopped worrying about what people think of me and started living my life to the fullest.

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